Food Allergy Action Hero of the Month

Meet Kathleen Silverman, Founder and President of ELL Foundation.
I had the pleasure of speaking with and interviewing Kathy about her passion to create a safer environment for children who are diagnosed with food allergies and working to promote a safer food supply overall.
Q: Tell me about yourself and your connection to food allergies.
A: I am the mother of a 7-year old with severe food allergies and anaphylaxis to milk, egg, peanut, tree nuts, and mustard along with environmental allergies and asthma. Prior to my son's diagnosis, I worked for more than 15 years in marketing and held the position of Partner for a strategic marketing consulting firm in Chicago, IL.
Q: Was there a significant event that inspired you to start ELL Foundation?
A: From my son's initial diagnosis of a milk allergy at 6 months, we struggled as we walked blindly not fully understanding food allergies and the many challenges and risks to safety of a food allergic child. During our son's 4th year of life, he suffered 2 anaphylactic reactions to food products that were mislabeled and contained milk ingredients that were not listed on the ingredient label. One reaction was so severe, we almost lost our son. During a 5 mile trip to the hospital the EMTs had to stop to pick up additional medical personel to assist my son. Each food product was later tested by an independent lab and confirmed for the presence of milk ingredients. During the same year, our son's preschool was supposed to maintain a 'no food' policy kindly requested that we search for an alternative school given the difficulty in controlling food/treats brought in for children's birthdays and other celebrations. My ever changing moment occurred one day when I looked into the innocent face of a 4 year old child and thought 'This is not the life that I want for you! You, as well as every child with or without food allergies, should have the right to eat foods and to be safe and to safely attend school to learn'.
Q: ELL Foundation has evolved quite successfully. It began sending out alerts about manufactured foods that resulted in an allergic reaction and/or cross contamination to being a leader in food allergy safety education of parents and teachers. Tell us about this evolution and inherent success.
A: ELL is very proud of its position as a leading organization recognized as making actionable changes in the area of food allergy safety: Educating to 'Protect Allergic Children Across America', (PAC). The organization continues to support allergen ingredient mislabeling by collecting Allergic Incident Reports from consumers who suspect a mislabeled food product resulted in an allergic reaction. ELL assists consumers with the following:
-Properly submitting the suspect food product to an
independent laboratory for testing,
-Notifying the respective manufacturer of the Allergic
Incident Report that was submitted,
-Notifying the FDA of the Allergic Incident Report that
was submitted.
With regard to the PAC training, we have also experienced an enormous level of interest.
Q: Would you share your goals for the future of ELL?
A: My sincere mission for the organization is to provide the financial and support services required to fulfill allergy safety training services to each and every family in need and to every uneducated school, child care facility, camp and community venue in need to better protect our children! ELL is also positioning to play a role as visible advocates in support of the federal government in its efforts to provide more accurate and complete allergy ingredient labeling, including advisory statements describing the shared processing environment and to monitor and enforce penalties for adherence among manufacturers.
Q: What would be your number one or most important advice for parents of children with food allergies?
A: Taking action to better protect your child offers a much needed sense of control and confidence in dealing with this potentially 'out of control' ailment. Get involved! Get involved at your child's school, within the community and with family and friends to provide education on your child's food allergy history and the requirements that you request in better protecting him/her. Take charge! There are many wonderful organizations across the country that promote food allergy awareness. You can make a difference in the lives of ALL food allergic children!

Wednesday, March 3, 2010

Celiac Disease study on quality of life found that children attending gluten free camps improved their well being from the PEDIATRICS.aapublications.org website

Published online February 15, 2010
PEDIATRICS Vol. 125 No. 3 March 2010, pp.e525e529(doi:10.1542/peds.2009-1862)

Impact of Gluten-free Camp on Quality of Life of Children and Adolescents with Celiac Disease

Tasce R. Simon Bongiovanni, BSc, Ann L. Clark, BS, Elizabeth A. Garnett, BA, Janet M. Wojcicki, PhD, MPH, Melvin B. Heyman, MD, MPH
Department of Pediatrics, University of California San Francisco, San Francisco, California
OBJECTIVE A gluten-free camp allows children with celiac disease (CD) to enjoy a camp experience without concern and preoccupation with foods they eat or the stigma of their underlying disease. The objective of this study was to evaluate the impact of gluten-free camp on quality-of-life indicators for children and adolescents with CD. METHODS Children aged 7 to 17 years with CD were administered a 14-question survey at the beginning and the end of a 7-day gluten-free camp. Surveys used a Likert scale to examine general well-being, emotional outlook, and self-perception for the week before each survey. Differences between the time points were compared. Data were analyzed by paired t test.
RESULTS Of the 104 campers who attended camp, 77 (21 male) completed the survey at both time points. Most (70%) had been on a gluten-free diet (GFD) for <4 years. All seemed to benefit from camp, no longer feeling different from other kids or feeling frustrated with a restricted diet. A more beneficial impact was found for campers who were on a GFD for <4 years. Overall, campers reported an improvement in 11 of 14 questions, statistically significant (P < .05) for 8 of those 11 questions. Improvement was observed in each of the 3 categories of questions: well-being, self-perception, and emotional outlook.
CONCLUSIONS Children who had CD and attended a week-long gluten-free camp demonstrated improvement in well-being, self-perception, and emotional outlook. The positive effects of camp were more apparent among campers who had been on a GFD for <4 years compared with those who had been on a GFD for ≥4 years, suggesting an adaptation to CD with time. A gluten-free camp that provides an environment of unrestricted foods can at least temporarily alleviate stress and anxiety around food and social interactions. Durability of these observations on return to daily life requires additional study.
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