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New AAFA-Affiliated Support Group Turns West Virginia Teal for Food Allergy Awareness

 

Sometimes it takes just one determined mom to make a difference. Here is what one West Virginia mom did in a short amount of time to create a spectacular Food Allergy Awareness Week (FAAW)!

Earlier this year, Robyn Clark, a community member of Kids With Food Allergies (KFA), posted about looking for help with an Easter egg hunt. One thing led to another. And pretty soon, she found enough people to form a support group, the WV Children's Allergy Alliance. The group is one of the many support groups affiliated with the Asthma and Allergy Foundation of America.

Her son, Matthew, was her inspiration. He is allergic to many foods, including wheat, milk, eggs, fish, corn, kiwi and some vegetables. The third grader also has asthma.

The group created a successful egg hunt for their kids. Next, Robyn and her members accomplished the following during FAAW: 

  • They worked with local schools to create awareness in the classrooms. 
  • They lit up two of the state's iconic landmarks in teal for TurnItTeal: the Elk River Bridge and the West Virginia Building.
  • They convinced the state's Board of Education to mail packets of food allergy information to every school in the state.
  • They got their governor to issue a FAAW proclamation.
  • TV stations covered their efforts.

KFA and Robyn chatted over email and phone about her efforts to raise awareness this year.

How was this year’s Food Allergy Awareness Week different than last year’s?

"This year was very different!" said Robyn. “It’s amazing, to think back from where I started,” she said. She recounted a severe reaction her son had in daycare. She said she often felt like she was the first – or the only – family living with food allergies everywhere they went.

“It’s been a hard road to here for us - but we're opening eyes!” she wrote.
She began to find others and found support once she began spreading the word about her support group. When she began reaching out for help with FAAW activities, she said she did not find any resistance at all. “Everyone I talked to was very receptive,” she said.

What were some of the school activities?

There were lots of giveaways and contests. KFA provided insulated lunch totes. Robyn filled them with a variety of food allergy related materials, including a kid-friendly allergy cookbook, teal bracelets, non-food treats and information about epinephrine auto-injectors. The bags also included coupons for allergy-friendly foods. After Robyn checked with the school nurse about individual allergies, she included an allergy-friendly treat. Those bags went only to children with food allergies.

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Her son's school held a "Spirit Day." Whichever classroom wore the most teal got an individually wrapped treat. "I wish you could have seen those kids when we told them that the treat was allergen friendly and they could have it!" Robyn wrote. In those rooms, everyone received a treat that was safe for everyone to eat.

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Activities continued even after FAAW was over. Over the past week, the school had a food allergy awareness poster contest. Two winners received movie passes donated by Robyn.

What was the best part of the week?

Where Robyn lives, the entire area gets a free breakfast and a free lunch in school. Many families in West Virginia struggle to make ends meet. And according to Robyn, there is a huge need for food allergy education among families. The school counselor agreed with this as well. When one child with an allergy received the KFA lunch tote filled with goodies, “you would have thought I had given her the world,” Robyn said. Most of all, the school educated children with food allergy facts during morning announcements. "We made a difference in her life!" said Robyn.

What advice would you give to other parents looking to raise awareness?

“You are your kid’s first and biggest advocate,”  in terms of keeping them safe and trying to create change, she said.

And focus on what children want. "It starts with the kids, is what we decided," she said. “Our kids are happy to get an extra few minutes of recess,” instead of sugary treats during school, for instance.

How did you raise food allergy awareness? Send us your story and it may get profiled on our blog as well.

Join Kids With Food Allergies to connect with other parents in a supportive environment.

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WTG Robyn   Love the idea of the spirit day and the extra minutes of recess instead of a sugary treat ~ what a great way to encourage kids to be more active and that there are other ways to celebrate outside of having treats.

It is a kid friendly allergy cookbook titled get cooking with mickey and friends. The boy is holding the book in the picture in that post. My family is a huge Disney fans and would love this cookbook. I checked on amazon and they only had used ones. Any infer you can get on acquiring it would be appreciated.
THanks so much,
Heather

The book was donated to us by our Allergist/medical director.  They weren't put into print for sale - just offered through the Dr. offices as a promotional thing.   I'd love to have them all the time for use!  I may look into Amazon myself to find them and buy them for when we have contests/etc for our group to give away....used or not!  Or start a trading library within our group. 

My son and I have decided that he should do a cooking channel on Youtube for kids with food allergies -something geared toward a little older kids than who Mickey appeals to - but its ME who is the slow down- who in the world has time to sit and write out recipes and get them in a book AND video it!  I really wish I could do stuff like this as my full time job!  Never enough hours in a day!  

I make my boy get in the kitchen daily with me so just in case his allergies don't go away that he can cook for himself when he's older...

Hi, Heather,

Since it was a custom publication with Mylan (the maker of Epi pens), you might contact the company directly and ask if they possibly had any extra copies of that book. I know as a former PR person whose supervisor was a former pharmaceutical rep, sometimes the PR folks wind up with an extra case of something left over. 

Here's the contact info for Mylan.

Post
Kids With Food Allergies
A Division of the Asthma and Allergy Foundation of America
1235 South Clark Street Suite 305, Arlington, VA 22202
Phone: 1-800-7-ASTHMA (1.800.727.8462)
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