FARE’s Teen Advisory Group (TAG) members are leaders in the food allergy community, providing peer-to-peer mentorship and working on projects in their local communities. In 2016, TAG tackled a variety of topics including allergens in makeup, dating, food drives, and bullying. Here is a look, in their own words, at what they learned and accomplished this year.
The Mid-Atlantic TAG put together a Mean Tweets video to highlight some of the attitudes about food allergy they encounter.
Food Allergy Bullying
Our goal was to inspire people with and without food allergies to end food allergy bullying. This project was something we all wanted to end, so we decided to take action.
Food allergy bullying affects one in three kids that have food allergies. That’s a number my group wanted to see as zero. That number shouldn’t be a statistic, but sadly we have to live with that. I hope that our video will inspire people to speak up against bullying.
Participants: Daytona Hodson, Kate Stack, Susan Tatelli, Amanda Yoksh, Monica Apollo MPA,PC-A, Sophia Valdez, Giles Kearns
Let’s face it, being a teenager is stressful enough. Having a food allergy makes it even more stressful. All the extra stuff we have to think and worry about just stinks. It may come as a surprise that eating a food we are allergic to isn’t the only way to be exposed to a food allergen. Recently, researchers found that people with food allergies such as peanuts may be putting themselves at risk of a life threatening allergic reaction if they kiss someone who has recently eaten peanuts or peanut butter. In response to this, I’ve created something I call “Kiss-Me-Kits.” These kits are the size of a mint box and include a toothbrush, toothpaste, dental floss, mouthwash and a food allergy information card. I designed these “Kiss-Me-Kits” specifically for teens like me with food allergies. While oral hygiene has been shown to reduce allergens in the saliva, the truth is I can’t rely on my date’s dental hygiene practices for my health and safety. Therefore, the true strength of the Kiss-Me-Kit is that it is best used as a lighthearted way to begin a conversation with a potential date, before our date begins, about food allergies, health behaviors, and thoughtfulness.
Food Allergies and Makeup
I have multiple severe food allergies (eggs, milk, peanuts, tree nuts, and shellfish, to be exact.). I have always been a strong advocate for allergy awareness and education in my town. While I’ve always pushed for better labeling with foods, I recently thought of something else. Cosmetics. I never really wore makeup because I found it too expensive and time consuming, but now I tend to wear it more often, especially when I go to concerts. I never considered checking ingredients on these products, but one day I discovered a lipstick which contained argon oil, a tree nut, which I am allergic to.
This prompted me to start checking ingredients on any makeup I buy, but then I discovered a new problem: almost every makeup product I found did not list any ingredients at all!
From that point forward, I decided to fight for better labeling on cosmetics. While we can simply avoid makeup as a whole, someone with a nut allergy could be required to wear makeup for a dance recital. They could work for a cosmetic company and have to test products. Someone could easily develop a nut allergy without knowing, use a product containing a nut oil, and have a reaction. I believe there needs to be change regarding this, and I will continue to fight for it.
My fight has not gone unnoticed. While I am doing this by myself at the moment, I have caught the attention of a few notable people. I received support from Dee Snider, leader of the band Twisted Sister, and recently got to meet up with Pennsylvania State Representative for the 122nd District, Doyle Heffley, to discuss the matter. He has agreed to help me with this and promised to help raise awareness as well. I still have a long way to go, but hopefully it will be worth it in the end.
No-Nut Butter Drive
Since I am allergic to peanuts and tree nuts, I decided to do a peanut butter alternative drive. I set up some cardboard boxes advertising the drive and asked a variety of grocery stores to display the boxes in the front of their stores. Several larger grocery store chains that I approached declined to participate in my drive. Other grocers such as Earth Fare and The Fresh Market declined to allow me to conduct the drive in their stores, but instead generously donated jars of nut free butters. Local Charlotte, NC grocer Healthy Home Market was willing to display my boxes in their three storefronts. The boxes were left out for six weeks and they each accumulated donations from shoppers. During the duration of the project, I worked with Parents of Allergic Kids (PAK), a local North Carolina food allergy advocacy group, to publicize the food drive through PAK’s social media. FARE also promoted my drive in the Charlotte FARE Walk for Food Allergy newsletter. On walk day, October 22nd, I brought a collection box to the event and gathered even more donations.
In all, I was able to collect 56 jars of nut free butters such as WOWBUTTER, SunButter, and I.M. Healthy SoyNut Butter. Initially I had intended to donate the jars to local food banks in my area to benefit needy food allergic individuals. However, the drive concluded just as Hurricane Matthew was pummeling the Southeastern United States, including my home state of North Carolina. Urgent requests for assistance to the eastern part of NC started pouring in. One of the leaders of PAK suggested that we send the donations to the affected areas and I agreed that this was a great idea. We sent the jars to a food bank that was able to separate and clearly mark the donations as appropriate for people with food allergies.
Food Allergies Declassified
New England TAG
For our 2016 project, New England TAG chose to complete a handbook, Food Allergies Declassified, for teens with food allergies encompassing a wide variety of topics and advice. While in our planning phases, our group noticed that one of the problems of being a teen with food allergies, especially a teen with newly-diagnosed food allergies, is that you can often feel isolated or disoriented. There are so many activities that are seemingly ‘normal’ to the rest of the population that require a lot more effort or planning for someone with food allergies. Because the 24 of us all had unique experiences and advice to offer, we decided that a handbook would be the best route to go in order to ensure all of our voices were heard and all of our stories told. Our Mission Statement, found at the beginning of the handbook, sums up our goal perfectly: “our hope in creating this handbook is to inspire and motivate other teens to handle their food allergies in a way that is both safe and empowering.”
Applications are now being accepted to be a part of the 2017 Teen Advisory Group. If you are or know a young person (ages 11-22) living with food allergy who wants to make a difference, applications are due February 5, 2017. For more information about TAG, click here.