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food allergy awareness

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Food Allergy Advocacy in Schools

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Sending your child off to school is worrisome enough as a parent—but when your child has a food allergy, that anxiety amplifies. 

My daughter is highly allergic to peanuts—off the charts allergic. Three years ago, when she was in kindergarten, I frequently received calls from her school that she had experienced a topical allergic reaction. Given the severity of her allergy, and the fact that they sold PB&Js in the cafeteria, this didn’t come as a surprise.

Her school had archaic food allergy protocols and procedures in place, and didn’t seem to grasp the severity of the situation. Their cafeteria was effectively a minefield for my daughter!

You should know: I'm not the kind of person that accepts the things I can't change. I change the things I can't accept. And I couldn’t accept living in constant fear for my daughter’s life.  

Fast forward three years, and her school district now has a food allergy awareness program in place and is making considerable strides to keep children with food allergies safe. 

How did this come to be? A few things happened. 

First, I engaged the school nurse. When I initially relayed my concerns, her response was, "We have food allergy guidelines in place." Now, let’s be clear, these guidelines weren’t routinely followed or required—they were recommendations. I felt for her, because she truly didn’t seem to grasp the seriousness of the situation; in her defense, she grew up in a time when food allergies weren’t an epidemic. 

It was then I realized what was missing—a true understanding of what was going on. People don’t know what they don’t know! 

In my heart I know that no parent, teacher, or school nurse would ever do anything to intentionally harm my child, yet there seemed to be a serious lack of awareness around the severity of her food allergies. 

My first goal was to make sure the district removed PB&J sandwiches and nut products from school cafeterias. After that, I focused on promoting education and awareness within the schools, and with children and their families. We needed to foster an environment of inclusivity, which I felt was sorely lacking. 

I’ve learned that adults find change difficult, but children usually embrace it!

Change is usually most successful with smart, slow, and strategic execution. We published a series of educational articles in weekly school newsletters and integrated food allergy awareness and education into school events (e.g., PTA meetings, school assemblies, book fairs, harvest days, etc.). We also organized book readings and games to coincide with national Food Allergy Awareness Week

The children embraced learning how to keep their allergic classmates and friends safe, and in turn, educated their parents by sharing what they learned in school. Coming home from school with a sticker that said, "I kept Sophia safe today,” prompted their parents to ask about the meaning of the sticker, and often began a conversation about food allergies. If mom or dad was making a PB&J sandwich for lunch the next day, their children might say, "Don’t make me that! It’s not safe for my friend!"

There are eleven elementary schools within our school district. We piloted this program at one school, then another, and another, and soon our awareness and education program was implemented throughout the entire district! In the meantime, we collaborated with the district administration to update and rewrite the food allergy protocols and procedures, and built food allergy education into lesson plans. We also created a district-wide food allergy informational brochure for incoming and existing families within our schools. 

Our efforts weren’t met without resistance, and these achievements took time and patience. I’ve learned that to work collaboratively and effectively with schools and other parents, it’s important to be clear and explain the WHY. Why are we removing peanut butter from schools? Why is my daughter unable to bring in cupcakes for her birthday? From experience, once someone understands the WHY, they often embrace the change. In turn, they often become a food allergy advocate themselves! 

- Abbe Large 

 

Abbe Large is a Senior Vice President at Lenox Advisors. She has held leadership positions within her school district’s PTA and currently sits on her town’s education committee. Abbe is a minority investor in Allergy Amulet.

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Take Two: The Importance of Carrying Two Epinephrine Auto-injectors

With Halloween around the bend, we wanted to share a quick PSA on the importance of carrying two epinephrine auto-injectors in case of an allergic reaction. 

Why? Let’s look at the facts.

In cases of severe anaphylaxis, one dose of epinephrine is often not enough. Up to 20% of people who receive an initial dose of epinephrine for anaphylaxis require a second injection. This can happen even without further exposure to the allergenic trigger! A second allergic reaction called biphasic anaphylaxis can occur between 1 to 72 hours (typically eight hours) after the initial reaction.

Despite these harrowing stats, most individuals do not carry two auto-injectors.

In a study of roughly 1,000 US patients and caregivers with epinephrine prescriptions, 82% said they do not carry two auto-injectors. Meanwhile, 75% of respondents reported previously administering epinephrine. Of those that sought emergency care, 45% did so because a second dose of epinephrine was unavailable. 

Education and awareness is also lacking. Only a quarter of respondents reported that they were advised to carry two auto-injectors.

But epinephrine is expensive.

We hear you. Epinephrine auto-injectors are not cheap, which can make it difficult to have multiple epinephrine auto-injectors on your person at all times.  

Fortunately, that’s starting to change. Increased market competition and PR scandals like the one that rocked Mylan have helped drive down the price. 

Additionally, below are some cost-saving options worth checking out. 

-      Check for discount codes and savings plans on manufacturer websites. 

-      Purchase generic epinephrine alternatives.

-      Explore mail-order pharmacy options (you may be able to receive a larger supply of medication at a lower co-pay amount if these benefits apply).

-      Price shop between local pharmacies—prices vary, especially between large chains and small pharmacies.

-      Ask your doctor about patient assistance programs. 

-      Switch to your insurance carrier’s “preferred” auto-injector (if applicable).

-      Double check that your pharmacy has applied all possible coupons at check out.

-      Ask your company’s HR department if they offer financial assistance to employees to cover prescriptions.

We hope you all have a SWEET and SAFE Halloween! And don’t forget to TAKE TWO!

-      Meg and the Allergy Amulet Team

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Spokin’s Susie Hultquist: A Fearless Food Allergy Mama!

Susie and her food-allergic daughter, Natalie.

Susie and her food-allergic daughter, Natalie.

If you’ve followed Allergy Amulet for a while, you know our team was founded by a female and that we love to support female entrepreneurs!

Unsurprisingly, we’re big fans of Susie Hultquist and the team she’s assembled at Spokin. This Chi-town team has built an app to help make managing food allergies easier! We recently sat down with Susie and asked her a few questions.

1. We understand you left your financial career on Wall Street to start Spokin. When did the “light bulb” moment happen?

It happened when my co-worker was selling girl scout cookies. I wanted to buy some, but in order to do that, I had to get ahold of a package to check the label and ensure they were safe for my family. I then went to their website to make sure the cookies were also available in our area. It took me 15 minutes to track down all the information I needed! That’s when I realized I was probably not the only person managing food allergies searching for this same information, and that there was a clear need to streamline and consolidate food safety information for the food allergy community.

At the time I was managing my company’s consumer internet portfolio and saw how different businesses were managing pain points. No one was solving this one, and I felt I was uniquely positioned to do so.

2. How long did it take to launch the app? 

It was two years in the making. I started by meeting with a lot of people who have food allergies. From there, we developed a content strategy and hired a graphic designer to work on app designs. We just celebrated the app’s first birthday!

3. What is your “why”?

My daughter Natalie. She’s allergic to peanuts and several tree nuts. I am determined to make her life easier and to help her live the fullest life possible. That’s what gets me up every day. 

A food allergy diagnosis often comes with a lot of no’s when it comes to food, and I want to be able to say yes as often as I can!

4. Spokin has a lot of new features and capabilities on the app. What are you most excited about?

Far and away is the map functionality! If you’re in the app and search within the “eateries” category you can choose any city in the US and see in seconds all the restaurants, bakeries, and ice cream shops others in the Spokin community have recommended. We now have 2.7 million reviews on the app and reviews span across 18 countries! 

To find in seconds all these yes’s after so many no’s is amazing. And it’s built by the food allergy community! This community is so generous. 

5. What does Spokin mean?

It’s a play on the word spoken. I had so many amazing interactions with people in the food allergy community that gave me advice verbally (where to eat in London, what chocolate chips to bake with, what to take with us on an airplane, etc.) but once spoken, that advice then vanished into thin air. All of this knowledge needed to be captured and shared with everyone. The idea was that if we built this platform, we could harness and share all of this great food wisdom with the food allergy community at large. 

6. When do you plan to release the Android version of the app?

We have started an Android waiting list and it’s on our product roadmap. We’re currently assessing demand, so please add your email to the Android list on our website, if interested! 

7. When you’re not focused on helping the food allergy community, what do you enjoy doing?

Spending time with my girls and my husband! We love to cook together, run together, and travel when we can. My girls all have very different interests so it’s fun to watch them pursue their passions. 

8. Since Spokin is based in Chicago, we have to know: do you cheer for the White Sox or the Cubs?

I love the Cubs, but I applaud the White Sox for offering peanut-free ballgames!

9. What’s your long-term vision for Spokin?

If everyone in the US with food allergies shared five recommendations we could build a database of 75 million data points that everyone can access! We’ve estimated that if it takes you 15 minutes a day to manage food allergies, then you can save a year of your life by having all of this information accessible to you. 

If you haven’t downloaded the Spokin app we recommend you check it out ASAP! Both Susie (Susie in the Spokin app) and Allergy Amulet’s founder, Abi Barnes, (allergy_amulet_abi in the Spokin app) have provided lots of recommendations!

-      Meg and the Allergy Amulet Team

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Food Allergy Awareness Week! Things I’d Like People to Know… And a Little Dr. Seuss

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It’s almost here, food allergy awareness week 2018! The official dates for this year are May 13-19.

I’m currently sitting in my office looking at a recent picture of my daughter and me at our state capitol with the governor to advocate for food allergy awareness. If you’ve followed Allergy Amulet for a while, you know I’m a passionate food allergy mom!

One of the greatest things about food allergy awareness week is that it’s a conversation starter. I LOVE that statistics are being shared left and right to paint the picture of how many people are affected! Heck, even buildings around the country are “turning teal” in recognition!

However, it’s important that the conversation not just be about how MANY people are affected, but HOW they are affected. So in the spirit of awareness and conversation, I wanted to share 10 things I’d like other parents to understand about food allergies!

1.    Food allergies are not a choice. We don’t know why our family has food allergies, and we have to manage them diligently every day. Please don’t feel sorry for us, help advocate for us!

2.    Food allergies can be life threatening and they’re a serious health issue, not simply an inconvenience—trace amounts of a food allergy protein can be deadly.

3.   Food allergies require planning. We can’t often join spur-of-the-moment outings, so please make sure to give us a heads up so we can plan ahead!

4.    If we ask questions about your food multiple times, it’s not because we don’t trust you, it’s because there’s no room for error. It’s not personal, it’s precautionary.

5.   Food allergies can be draining—mentally, emotionally, and financially. We can’t let our guard down and our vigilance level is always in “on” mode. We want to experience the same events and activities as everyone else, but it’s not always easy.

6.   We’re not germ freaks if we ask you to wash your hands after eating, or if you see us wiping down an airplane seat with disinfectant wipes. It’s simply that we are trying to keep the risk of allergen exposure to a minimum.

7.    Activities don’t have to involve food to be fun! If you know that someone with food allergies will be joining an activity or celebration that you’re organizing, try to be mindful of the foods they avoid (and give them a heads up if their allergen will be present so they can plan accordingly)!  

8.    Always feel free to ask questions. We will never get annoyed if you ask us a million questions about our allergies. Education is the first step to understanding!

9.   We’re just parents doing what we have to do to keep our kids safe. Please realize we’re not trying to inconvenience you, and that we’d do the same for your child!

10.  It helps to have a village of support so you don’t feel like you’re isolated on an island—if you are part of someone’s village, THANK YOU. It’s not an easy task!

Lastly, I leave you with some brilliant words from Dr. Seuss’s Horton Hears a Who. It seems appropriate for food allergy awareness week. ☺️

Don’t give up! I believe in you all!

A person’s a person, no matter how small!

And you very small persons will not have to die

If you make yourselves heard! So come on, now, and TRY!

 

The Mayor grabbed a tom-tom. He started to smack it.

And, all over Who-ville, they whooped up a racket.

They rattled tin kettles! They beat on brass pans,

On garbage pail tops and old cranberry cans!

They blew on bazookas and blasted great toots

On clarinets, oom-pahs and boom-pahs and flutes!

Great gusts of loud racket rang high through the air.

They rattled and shook the whole sky!

 

When they got to the top,

The lad cleared his throat and he shouted out, “Yopp!”

And that Yopp...

That one small, extra Yopp put it over!

Finally, at last! From that speck on that clover

Their voices were heard! They rang out clear and clean.

 

And the elephant smiled. “Do you see what I mean?”...

They’ve proved they ARE persons, no matter how small.

And their whole world was saved by the Smallest of ALL!

 

- Meg and the Allergy Amulet Team 

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