Ep. 280: Why FAACT's Food Allergy Awareness Month Campaign Is for You

This year, FAACT’s Food Allergy Awareness Month campaign is “Invisible No More: Food allergies may be unseen, but they should never be unnoticed.”

It’s a powerful reminder that while food allergies aren’t always visible, the daily effort to stay safe is very real.

So how do we raise awareness for something we can’t always see—and better support one another along the way?

To help us shine a light on this important campaign, we’re joined by allergy advocate and former President of the Utah Food Allergy Network, Amanda Bee.

Resources to keep you in the know:

• FAACT Food Allergy Awareness Initiatives - Food Allergy Awareness Week and Month 
• Social Cover Photos, Ideas for Activities, and Social Media Post Content

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 Sponsored by: ARS Pharma

Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Transcript

Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews

and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board-certified allergist or healthcare providers for advice specific to your situation.

 Hi everyone. I'm Caroline Moassessi, and I am your host for the FAACT Roundtable podcast. I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog. And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, I just want to pause for just a moment to say thank you to ARS Pharma for being a kind sponsor of FAACT's roundtable podcast. And please note that today's guest was not sponsored or paid by ARS Pharma to participate in this specific roundup podcast this year.

FAACT's Food Allergy Awareness Month and Week campaign is called "Invisible no More."

Food allergies may be unseen, but they should never be unnoticed.

It's a powerful reminder of what so many in our community experience every single day.

People with food allergies often show no visible signs as they move through school, work and everyday life. But behind the scenes, they're constantly managing their safety through careful choices, routines and treatments.

So how do we bring more awareness to something we can't always see? And how can we better support one another to keep our community safe? To help us shine a light on this important campaign, we're joined today by allergic disease advocate and former president of Utah Food Allergy Network,Amanda Bee.

Caroline: Welcome, Amanda, to FAACT's Roundtable Podcast. We're absolutely thrilled, delighted. I don't know what other words to use, cause I just adore you so much. But we are just so happy to have you here on FAACT's Round Table Podcast.

Amanda: Hi Caroline. Thank you so much for having me. I always love when we talk.

Caroline: I do too. I am so biased, but I do too.

To get us started, we'd love to hear a bit about your story and can you share your background and how you got involved in the food allergy community?

Amanda: You know, I feel like my story has changed a bit over the years, so. So I guess let me do an updated story.

So my. I have three children. First of all, I'm married, I have three kids and my oldest is 14 now and she was diagnosed with milk, egg and beef allergies when she was six months old.

So like right off the bat, Things were just like, oh, my goodness. And that was a hard diagnosis. That was incredibly hard.

I didn't really know anyone who'd been allergic to those things. I don't think I knew you could be allergic to things like that.

And because she was my first, and it was my first experience as a mom, I felt like it just really sent shockwaves through me. I felt so much grief and, and so much loss.

But from there, you know, I quickly went from this is what we're doing to okay, now what do I have to do? Because I'm always the, the what next? What can I be doing?

How can I be prepared? And so I would stay up for hours at night researching, you know, what am I going to do when she goes to kindergarten? What new research is there?

You know, I, I remember I found this was when Allergic Living magazine, they were printed and I found one of those in the allergist office. And so I would read through that and I started searching things out.

And eventually when she was,

oh, I want to say, a couple years old, I found a local nonprofit and we went to a community event. And it was the first community event she'd ever been able to go to.

And, and she was safe and included. And I just cried and cried and I was so excited that, you know, there were these things out there. So from there, you know, I became first her advocate,

and then as I kind of grew into this world, you realize that what you're advocating for is change,

broader change,

so that your child doesn't have to ask for exceptions or special protection.

You want to change the way the world views food allergy,

and they want to help protect your child, not because they're cute or they're sweet,

but because they are human.

Caroline: That is so profoundly put. I just love how you explain that. And we can all relate to everything you said.

Staying up late at night and wanting to see change, not just for our child,

but the entire community.

Amanda: Yeah, yeah, no, absolutely. And so from there I started volunteering.

And then eventually I ran a non profit for food allergies. I've been on a couple national boards. You know, I've spoken at FDA, Pedic hearing, for Nephi,

just anything, honestly. I go to the schools, I go to the elementary schools, I go to other people's schools, I answer phone calls. I will be your food allergy friend.

Let me tell you,

if you need a friend, I will be your friend and I'll help you.

Caroline: That is so true. And I have to say, when you were just talking about your daughter being 14,

I was thinking back to photos I seen of you two when you were advocating and she was just so little. Can't get my head around that. She's this teenager.

Amanda: I know she starts high school next year and let me tell you, that is just ripping at me.

You know, life goes on. I had more kids and we actually manage multiple allergic diseases in our family. Like, the more kids you have, the more the list grows because we have all heard of the Allergic march and boy, do we have all of them in my family.

We do.

So, yeah, like I said, we just. I've become an advocate not just for food allergies, but for all allergic diseases. And it means so much to me.

Caroline: Well, thank you for sharing all about your family and your community involvement. We all appreciate what you do.

As we talk about the Invisible No More campaign and theme for Food Allergy Awareness week and Monday month,

what does this message bring up for you both personally and as an advocate?

Amanda: When I hear Invisible no more,

I hear a war cry.

That's what I hear in my head. I hear a call to action.

I hear my child will be invisible no more. Your child will be invisible. Norm no more.

And I see like a bullet point list in my head pop up of the things that we need to do.

We need to educate, we need to talk, we need to be brave and share our stories with people,

even if sometimes we're met with a little pushback.

Like, we need to be brave enough to talk to people who don't see things our way and try to help them understand.

Because I believe that most people are good.

I really do.

I think most people want to help our community and maybe they just don't know how, or maybe they don't know what it includes. Maybe they have a false idea from social media,

movies,

other people of what that means.

And so I try to check my attitude at the door and walk into every opportunity and every conversation about food allergies and allergic disease without attitude. I talk to them with humility and I share our story.

And so when I hear Invisible No More, I hear it's like, go time. Let's go.

Caroline: I absolutely love that. It just sounds so energizing. And you're right, it is go time. And then also just looking at that term invisible know more. There are things that we also deal with that are invisible.

Can we talk a little bit about what are some of those unseen challenges that people might be navigating every day?

Amanda: There are so many, and I think it depends on your ages and stages and where you are, but, you know, heading back to invisible. No more.

The weight of invisible disease and disability on anyone is so, so heavy. And I feel like bringing that to light could help kind of ease that burden. And that's. I want to do that for my child.

I want to help do that for others.

I think some really difficult things that people are dealing with right now are things like social media.

Because so many people go to social media and there's so much information out there and so much is good, but so much is bad.

And I feel like a lot of people are not told.

Like if you find out information that you think is applicable to you,

go and discuss those things with your physician because there is a chance your physician has not heard of it. Maybe your physician hasn't heard of Xolair or Dupixent or an oral food challenge.

It is entirely possible and it is something I've run across. So I would say it's not that you shouldn't be seeking answers, it's that you need to be a responsible consumer.

You should always be seeking answers. Always have an open mind. But make sure to vet these answers with a responsible person and get online.

But don't just get online willy nilly. Get online and search out non profits that deal with your disease.

Like fact. FAACT is amazing. There's so many wonderful resources online with fact.

Webinars are another amazing thing that we have access to now that when I had first had her diagnosed, I didn't have access to those things. Like that was not a thing that they did.

Covid changed a lot for us. Some bad, some good, but so much online content is there right now.

But the other thing I would be really vocal about with parents today is make sure,

whatever age your child is,

make sure you are empowering them.

Make sure that you teach them.

Yes, you have these food allergies.

Yes,

there are risks.

But here is how we empower you and here's how you can mitigate these risks. And should the worst happen,

here is our emergency action plan and here's why we think this will work.

So it's not about lying and saying there is no risk because there is risk.

There's risk with food allergy,

but there is also life. And I think it's so important to focus on the things that we want and for them to reach out and grab it with both hands instead of saying, oh no, this is not for us because this would not be safe.

Let's find a way to make it safe.

Let's talk about what you can do at what Age should your child be holding their EpiPens? At what age should they help talk about their food allergies to their friends?

At what age do you make your child order at a restaurant while you're there?

At what age do you start having the physician talk to your child while you're there to help back it up?

Make sure you are raising your child to be the most amazing, capable adult who doesn't live in fear,

but lives in fact and reality and feels powerful enough to go out there and advocate for themselves, knowing they aren't a burden.

They just have something they need a little help with and that is it.

Caroline: This is amazing. These are amazing concepts and tips, not only just for families, but, you know, this is information we can share with our friends and everybody else, right? This is our goal, is to have this big, wonderful life and we can do it when we're all working together.

And that is again, the point of this week and this month is to bring all this great information out.

And so now just kind of looking at this campaign,

how do you feel when we do these? Do they help shift the way others understand and respond to food allergies?

Amanda: Yeah, absolutely, I think so. I mean, I, I definitely think so.

I think, and I think the world is changing. I think in the broader community outside of food allergy, when I have conversations now, the responses are different than they were a decade ago.

You know, instead of, oh, I've never heard of that. You hear, oh, yeah, I know so. And so has this or a kid at our school or this or that, you know, and there's less of that.

Either wanting to distance because they don't understand and it scares them,

or pity and there's more of just, oh, yeah, we've dealt with this, we've seen this. And I just bring special treats for this kid or my kid washes their hands before they go into the classroom.

And I think we need to focus on that so much when we're out there and we're advocating and we're talking about Food Allergy Awareness week and Food Allergy Awareness Month.

Go have conversations,

okay? Your kid can't eat at that restaurant, still talk to them. Be like, oh, well, if you had a pan right here that you could cook on and if you followed these steps or, you know, did you know that you can look online and find ways to train your staff on how to cook food for fruit allergic individuals,

or go to your school,

show them how they can be more food allergy friendly.

Talk to your church,

just talk, get out there and Talk, you guys. I know everybody can do it. I know it because I never could do it before I had a kid and. And now I never shut up.

So.

Caroline: That's so funny. You know, it is so true when you think of it. When all of us first started, we probably weren't that vocal. And now we're like, stranger. You want to learn about food allergies?

Caroline: Of course.

Amanda: Did I hear food allergies in the grocery line five aisles back? I better go see if they need help. Like Batman.

Caroline: Exactly. That's exactly where we are. So now, do you have any plans right now on how you're going to celebrate this year or how you typically celebrate?

Amanda: So. I haven't made plans yet this year. You've caught me off guard.

I need to figure something out. But in years past, we've done things like shared our story online.

We have gone into schools, not just my daughter's school or my son's school, but into different schools and read to classrooms about food allergies. We've done things where we go to community events and talk to people.

Reach out to your legislator and talk about food allergy laws and why food allergies are important to you. They will remember you.

They will learn your story. And suddenly when they hear food allergy again in the future, they may think twice.

There are so many different ways that you can make a difference. You can get a proclamation from your governor for food allergy awareness week. You can go to Fact's website.

I'm sure there's a list of wonderful things that you can do.

Caroline: There is.

Amanda: Yes.

Caroline: And we do even have information on how to ask for a proclamation. And I will put that in our show notes for sure.

Amanda: Great.

Caroline: This has just been amazing and fun and again, I just love your inspiration and your energy.

But before we say goodbye today, is there anything else you want listeners to hear from you?

Amanda: Yeah, there is.

So,

you know, I would like to say to listeners,

it's okay to feel however you want to feel at any given moment about your food allergies, about other allergic diseases,

other things that you're dealing with.

I think often there's a lot of pressure to pretend like something is not bothering us or it's not hard,

or to just clam up and not share our struggles.

And you don't need to do that.

I think balance is great. I think that you can be both a positive food allergy parent who embraces the world and tries to make change for your child and make it a safe place for them,

while also acknowledging that there's grief that comes with this and letting your kids acknowledge that grief,

you know, let them feel however they want to feel.

We can't fix everything. There are things that our,

our kids are left down of sometimes. Sometimes there are going to be people who don't react nicely and it's not okay because it's not nice. But it's okay to feel whatever way you want to feel about it.

If you're angry,

sad, whatever you want to do,

you go for it and,

and reach out. Never ever stop reaching out.

Please don't sit home alone and scared and think that you don't have anyone else out there who will understand what you're going through.

Go online,

find support groups near you,

find a friend, post online and say, hey, I need a friend who has who understands food allergies.

Someone will find you. Ask at your allergist office.

So just always reach out.

Caroline: Beautiful words for us to end by beautiful advice.

Before we logged on today listeners, I was talking to Amanda and I told her one of the things I enjoy about her is how she makes all of us feel included.

And I think she just did that. So thank you Amanda for what you do in the community, for spending time with us today and telling everyone you know it's going to be okay and giving such wonderful inspiration.

Thank you for all of that.

Amanda: Oh, thank you so much, Caroline.

Caroline: You are welcome.

Caroline: Before we say goodbye today, I just want to pause for one more moment to say thank you to Ars Pharma for being a kind sponsor of FACT's roundtable podcast.

And please note, today's guest was not sponsored by or paid by Ars Pharma to participate in this specific podcast.

Caroline: Thank you for listening to Facts Roundtable Podcast.

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Have a great day and always be kind to one another.