Don't Feed the Fear: Food Allergy Anxiety & Trauma

Amy Burkett: A Mom's Advocacy Work and Allergy Safe Halloween Tips

• Amanda Whitehouse • Season 2 • Episode 8

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Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.

For our next fall episode. On advocacy. We have my friend and fellow Buffalonian. Amy Burkett here. To tell us how she went from scared mom. To taking action and protecting her. Her son. Amy is a mom to three boys, one with multiple severe food allergies. Allergies and twins with the dairy sensitivity. She is on the board for the greater. Buffalo food allergy Alliance, a local support group, which she helped. To become an official nonprofit organization. She started the allergy awareness. Uh, action 5k last year to raise money and awareness. Amy has also advocated in her son's school district for allergy inclusion and. Protections and across Western New York to educate the community about the importance. Once of epinephrin and to get stock epinephrin and police cars. Amy is the epitome of standing up and taking action, even when you don't know where. To start and I hope she'll inspire many others to band together and do the same.

Dr. Whitehouse:

Thank you so much for taking the time to talk, Amy. I love chatting with you, and I'm sure that everybody that listens to the podcast will enjoy hearing all of your thoughts and ideas on what you've been up to in the allergy world.

Amy Burkett:

Well, thanks for having me. Happy to be here.

Dr. Whitehouse:

Of course. Why don't you start just by telling us a little bit about your family and, and what's going on with allergies in your house.

Amy Burkett:

Sure. my oldest is 10. he was diagnosed around the age of two with peanut, tree nut, and egg. So it's been many years navigating this. I have, I also have nine year old twins, that do not have a diagnosed, food allergy, but they do have sensitivity to dairy. So I try to li really limit that because if they consume too much dairy, they'll have an eczema flare. And some other digestive issues. So, that's, that's for my kids. Yeah.

Dr. Whitehouse:

I would love for you to tell the story of when you had this moment that just hit you of like, I have to do something. So this fall, we're talking about advocacy. That's why I wanted to have you on because I love how you just got kind of spurred into action and doing something about

Amy Burkett:

Yeah. What happened when my son was in second grade, and actually my advocacy, journey didn't begin until it had to be a year after the incident that he experienced. He was eating lunch in the cafeteria and two of his classmates, attempted to wave peanut butter and smear peanut butter on his lunchbox and his containers. And it was very frightening, pretty traumatic experience at his young age. It took many months for us to work through that with him. He had a couple of nightmares as a result and at a young age started teaching him how to use the EpiPen and the consequences of what really could have happened. But it wasn't until an entire year later when I met another mother whose child had milk thrown all over him and he was severely allergic to milk. And it was in that moment that I said, what is going on in these school districts? Because I really truly felt the reason that these kids engage in this type of behavior is because there's no education in the classroom. All these children are put into an allergy classroom, but they're never taught anything about what an allergy is and what can happen to their classmates. So I think it was the lack of education, the lack of awareness going on in the schools that prompted this. What can we do? Like we have to get in there. We have to start raising awareness. it's not fair to any of the kids. kids that don't have allergies. I think they're just left to their own curiosity. They, they are told they can't eat certain things. They're not told why. You know, again, no, no lesson involved. They have no idea what an EpiPen is. and that's where it started. I stood there looking at this mom, just thinking, okay, what can we do? We really need to do more. And, since then we have, we have made some real progress.

Dr. Whitehouse:

Yeah. So it sounds like there's that moment. Like I think we all, when, when we have our traumatic moment, right. I think we're all in such a scared spot that we're just hoping and trusting that those around us are going to take care of us. Right. So I don't, I don't want to put words in your mouth, but it kind of sounds like you thought the school district would. You know, handle things. And then over time, you just realized that wasn't an isolated incident. They're not going to do anything. We have to step

Amy Burkett:

Yeah.

Dr. Whitehouse:

it happen.

Amy Burkett:

That's it. That's absolutely it. You put your trust, into the school districts and they try to reassure you. But ultimately what we came to find out is there really wasn't any true allergy lessons or any type of awareness going on whatsoever. So since that incident, allergy awareness lessons have become a part of the health and wellness curriculum, in my son's district. And So that's really nice to see. they do, now, recognize allergy awareness week in May in the schools that had never been done before. so like I said, there's, there's progress there,

Dr. Whitehouse:

So how did you start to make that happen? Where did you start and how did that unfold? I'm sure it wasn't just that you called and asked and they did it.

Amy Burkett:

right? So I first identified, you know, I was very terrified when the incident happened to my son, that they were going to discipline the other kids. And I, I really was, very fearful of discipline because I feared retaliation. And I really, after I heard and learned what was happening in the classrooms, I realized the only reason the kids engage in that behavior is because they just lack the awareness. so I pushed for lessons, I, I pushed for the health and wellness teacher to get in there, do some allergy lessons, there's plenty of books out there available, so I mean the materials there, it just wasn't being done and I, met a couple other parents in the district and we formed a little team and we got in there now, we've had some meetings with the districts and, we've had some, some really good change since. I

Dr. Whitehouse:

So for those who are wanting to take action like that and don't know where to start, who in their district is a good person, like a starting point, a contact point, you mentioned the health and wellness educator.

Amy Burkett:

tried to go that route. I really wasn't successful at first. So I went up, we went, we as a small group went up to the superintendent, had, was able to get a meeting with him, and we ended up having, subsequent meetings with the assistant superintendents. and that's where we really started to see progress being made.

Dr. Whitehouse:

I love that you emphasize, not disciplining and having this harsh reaction, but kind of to initiate, even though it took you a few tries, some positive conversations like education and encouragement and collaboration, not kind of going in with your anger and rage.

Amy Burkett:

Yeah, I think at such a young age, you just, you know, kids are kids and if they're left to their own devices and they're curious, these are the behaviors that you'll see. If you can be proactive And. teach and answer their questions, then we can prevent. I feel we can prevent some of this from happening. I see that it still goes on. You see the articles, you see it on the news that this type of thing is going on. So What I did, following that episode was I invited, all of the kids in my oldest son's class and the kids in my twin's class and their parents to come to a non school event. And I called it an allergy awareness party and a couple of the other moms and I created a PowerPoint and we, we did a whole presentation and then we got permission from the parents to do EpiPen training and these kids lined up so quickly. So it started there. It was very small. I think I had about 30 or 40 people show up, which I felt was very successful. everyone was super engaged. The kids loved it. They loved the PowerPoint. They were clapping and singing at the end. And after that, I think my son. I had maybe had one or two kids with allergies also come, and I think after that they just felt so much more supported in school, and they felt safer knowing their friends were aware, their friends were trained on the EpiPen, and I really saw a change in my son after that. He just seemed a lot more comfortable and confident, being at school.

Dr. Whitehouse:

That's awesome. I love that you just took it into your own hands, because you're not talking about a school event, you just, on your own, invited everyone privately and threw this party, and I think you've talked about, didn't you, wasn't it a big pizza

Amy Burkett:

Yeah,

Dr. Whitehouse:

weren't getting school

Amy Burkett:

yeah, I just, did it. I did I use my own money because I really felt it was such a need. And I was I was terrified of what could have happened that day. I mean, in the moment, my son didn't have a zepi pen with them. it. was locked up in the nurse's office, which I mean, we all know that's a big problem. The nurse would have never made it to him in time had he suffered a reaction. So, I mean, there are so many layers to the situation. He now self carries. He's self trained. He, he's we've come a long way since that day.

Dr. Whitehouse:

Can you talk about that part, in addition to the school wide advocacy that you've done, you've made a lot of changes in how the school is handling his individual needs. Allergy needs. Could you tell people about that part? Because a lot of people get lost in this question of, do I need a 504? Is it a health plan? How, how do they that in your experience?

Amy Burkett:

At the time, of that incident, he had an individualized healthcare plan. When he was in kindergarten, we were talked out of a 504. And so I sort of put my trust in the process. after the serious incident in the cafeteria, we had a 504 plan. so with the 504 plan, he has some accommodations now, some modifications. he carries his own EpiPen. The classrooms are not free. Any specials that he goes to are free. computer class. Those are also not free environments. I did have a friend of mine whose daughter was in computer class and ended up going in anaphylactic shock from touching a contaminated keyboard. So you learn that these things can so, um, can very easily happen throughout the course of the school day. So it's, it's learning the 504, learning what your individual child needs. in the beginning, he only carried it to the cafeteria, but then there was an incident in a classroom with a teacher eating nuts. his friends that were then at that point aware and trained really advocated for him. So my son didn't even have to speak up for himself. He had about six or seven friends come to his rescue in that moment. It was just so wonderful to hear.

Dr. Whitehouse:

tell us, I love that story will you share, if, if you're

Amy Burkett:

Sure,

Dr. Whitehouse:

think your son would

Amy Burkett:

sure. It was on my phone. I started getting multiple texts from all these parents telling me the same thing and that their kiddos came home and explained that the art teacher was eating nuts when they walked into the classroom. There were some nuts on the floor and my son's classmates said you can't eat those in here. You have to use a Lysol wipe. You have to wipe your hands. You have to wash your hands. And my son came home and he's like, mommy, I, I didn't even have to say anything. All of my friends helped me and my phone, all these moms. And I'm like, oh my gosh, please give your, your kiddo a hug for me. Thank you so much. Like it was just, I, I don't even know if I have a word, for the feeling for, for what happened in that moment and all these kids just really coming to help him. It just brought tears to my eyes. It was so, it was a very emotional moment.

Dr. Whitehouse:

I think it's such a good example of what you were saying earlier, they're going to reflect what they're taught, right? We think of it as if it was a lack of conversation, but if we don't speak to them specifically and educate them, they do hear about allergies, and it's almost all like jokes in movies. It's stereotypes. It's stuff like that. That's really negative about it. And just again, I'm not saying that the school district was doing that or promoting that, but that's just in the world all around us. So I think we think kids haven't been talked to about allergies, but they have been soaking in those messages from all around them their whole lives. And until you flip it, and like you did so clearly with his

Amy Burkett:

Yeah,

Dr. Whitehouse:

they soak it right in when we, when we teach them how to help each

Amy Burkett:

yeah. Little sponges. I think that's the, that's the hurdle that we're still working on getting over now as a group, change, shifting that mindset. I think, as we toward the middle school and we toward the high school and we started to learn that these older kids, they don't want to talk about it. They haven't told their friends about it. Their EpiPen is buried at the bottom of their backpack. No one knows it's there. They don't want to, you know, they don't want to see it. Stand out, I guess, is the word you can say when, because it's that mindset that's, has been treading water for 20 something years, instead of teaching these kids years and years ago to advocate for themselves, it's okay to speak up, it's okay to, to teach your friends about the EpiPen, it's just been brushed under the mat and now we want to bring it out, we want to bring it to light, it's okay, it's okay to have an allergy, you're a person first. And then you have a life threatening allergy. You're a student with a life threatening allergy. You're, you know, a high school kid with a life threatening allergy, not an allergic kid. Like, we don't, we don't use those types of labels anymore. We haven't used them in years. So it's shifting that mindset of it's okay to talk about, it's okay to teach your friends. I have an older nephew who went, you know, went away to college and luckily his Roommates and housemates were trained and they had to use an EpiPen on him and thank God for that awareness. But that's not what we're finding out. as we get out there and we advocate, I know that some high school, middle school kids, they're not carrying their EpiPens. I've met so many adults that are not carrying their EpiPens. It's just like shifting that mindset.

Dr. Whitehouse:

Yeah. I think because generationally, it's getting a little more common now with the younger kids and they're moving up, but People who miss that I think are the adults now who are more likely to be hiding. and I think it's really important to remember that everyone has something different from everyone else or that's a challenge or something unique about them that they have to manage in some way. And most people you can't see it. So with kids with food allergies, you can't see it other than what they have to carry. their epinephrine and some, you know, a medic alert. but that's kind of the language that I use is sit in the room and look around. One of those kids has asthma and they have an inhaler in their backpack. One of those kids had trouble reading and they have to take special reading lessons and you don't necessarily see it because they don't do it in the classroom. And to give them examples, so, so, so many examples of what everyone deals with. And wouldn't it be great if we. All knew openly and kindly these things about each other so we could help each

Amy Burkett:

Yeah,

Dr. Whitehouse:

don't

Amy Burkett:

for sure.

Dr. Whitehouse:

How do you phrase it?

Amy Burkett:

I think? with the one in 13, one in 13 kids and one in 10 adults, and it's So on the rise still. And even with adults, like not knowing and getting stung by a bee or eating a piece of seafood and all of a sudden having a reaction and not even knowing it's so on the rise. So I think, I think it's going to take still a long way to go to reach those middle schoolers and those high schoolers and those adults. we have some work to do there, but I'm seeing a change. Like I'm starting to see a change. We're getting out there. We We did a presentation at a local high school the other day. We had a lot of high school kids participate, because we weren't sure if the high school kids were going to want to raise their hand or come up and be trained on the EpiPens or get the awareness information, but it? was very successful. So I was, I was really happy to see that.

Dr. Whitehouse:

What were you finding with those high schoolers as far as how much they already knew? Did they have any familiarity?

Amy Burkett:

They did. Yes, they did. Some of them hadn't, used a trainer in a really long time. They had a younger sibling that has severe food allergies, but they just haven't had a refresh in so long, or they lost the trainer at home, little things like that. But they did have some awareness, Some of them had allergies to melons and fruit. So they were like, I don't really carry it in the winter. so for me, it's like, Oh, You know. you have, you really need to carry it all year round. meeting a lot of adults that leave it in the hot car and the cold car and haven't, they haven't expired one from 2011. so I just meeting a lot of people, getting the word out, you really come to understand that we need to do more.

Dr. Whitehouse:

Yeah, I think this is what you're trying to do, but obviously from outside of the schools, we have, safety drills. every year they have fire drills, they have fire safety, come in and talk to kids about, make sure you have an escape, and they do, they do the intruder drills, right? People don't want to talk about scary things, but those have become routine to refresh people's memories and educate, not just the adults, but the kids. I think staff get a little epi refresher training. in most organizations, but I'm talking about it being a routine part of kids education, safety and health education that they get every year. And, I don't know that it's happening, but I think you're trying to get there,

Amy Burkett:

Yeah, we've really made a lot of progress, coming, coming from Allergy Awareness Week in May. And this year we saw a lot of allergy awareness going on where all the years prior, nothing, nothing ever existed. so that's a really good thing to see. I don't see it in a lot of school districts. We're hoping that we get out there and we can do more to see it in the school districts, but it's there and it's available. Fair food allergy research and education. In fact, those are two great resources that have the materials ready for school districts to just print out and use. and they're wonderful resources. So like the information's there, it's available, it's just alerting school districts to it. I think most districts will train their staff in how to use an EpiPen, but I think There's no bigger awareness piece like, Oh, great. I know how to use an EpiPen, but can I identify the signs and symptoms of anaphylactic shock? Do I even know the top nine allergens? I think that piece was missing in the EpiPen training. personally I do.

Dr. Whitehouse:

agree. And, and I think it's something that the kids need to know too, an adult can't be expected to necessarily notice immediately when they've got a classroom full of kids, and the, and the kids might be the ones in a conversation with them, or looking at their faces and noticing when symptoms start to happen if the child isn't identifying it themselves. So I just would love. So much more of this as a routine part of our education and society as a whole.

Amy Burkett:

yeah, for sure. I think, teaching the young kids and even the older kids who just haven't had it, teaching them how to advocate. For themselves is huge. And then when we teach our own children, reminding them that they're not the only child in the world with a food allergy. Like sometimes my son would be like, mommy. You know, no. And I'm like, okay, just remember this isn't just for you. It's for all the other kids that are going through this. It's for the other kiddo that had milk thrown all over him. It's for the other kiddo that was teased and bullied. And it's, you know, getting that out. And it really opened up my heart. to realize, oh, I'm not t are doing this for everyo the bull by the horns thi his whole. baseball team b now is on the bench in th can't just drop a medical not teach the kids what i there. And these kids, th Once you get in there and They want to know, they want to learn, they want to help.

Dr. Whitehouse:

They do. The way you're describing with your son, I have found the same to be true with mine. They're like us. Sometimes it's hard to advocate for yourself and expect, like, I, I want people to help me, I need you to do this for me, but when they see someone else suffering, then they're a little bit more motivated, just like we are sometimes like, oh, now I'm fired

Amy Burkett:

Yeah.

Dr. Whitehouse:

ready to help. I've seen the same with, with my son when he, you know. didn't want me to do anything to step up when he had issues. But when I've shared, that other kids have had, then he's a little more motivated. I want to get involved. Maybe I could do this or what could I say? and I think that just it's so much kindness inside of them. And like you said, all the kids around them wanting to help each

Amy Burkett:

Yeah. And I think the high school kids, there's so much potential there for them to help the younger kids because they've been through it. They're 10 years ahead or 12 years ahead of the younger kids. They just haven't, talked about it as much, but they're there. and my oldest was able to FaceTime a fair friend. in the beginning of school, there were some anxiety issues going on and, He was there and it was just wonderful that my son could FaceTime him and he could talk with him. And, he just helped him. He helped them so much. Just be just being had gone through it and he shared some of his own stories with him and It was just such a tremendous help to my son at the time.

Dr. Whitehouse:

It's so normalizing to just talk to someone else who has, it's just like you and I, like when all of us allergy moms get together, there's, there's a plan, there's a function or something that we're doing, but really just, we just want to talk about it

Amy Burkett:

Yeah,

Dr. Whitehouse:

and be understood.

Amy Burkett:

it's, it Can be really emotional, really emotional.

Dr. Whitehouse:

Can you talk about how you got involved with FAIR? Because I know you've done some of their, events and, and advocacy. events too, right?

Amy Burkett:

yeah, well we went down, and participated in FAIR's Courage Act Congress. So we were down in D. C. with, with FAIR last year and we met some fellow FAIR advocates that now, consider lifelong friends. and we learn the process of how things get passed into law. It's a lot of work. my son went into the, house building and the Senate building and met with representatives and talked about his personal journey and the things that he had gone through and the reason what, and it's tied into the reason why we need the EpiPen Price Cap Act. or why we need certain laws passed to protect this population and the 33 million people that, have life threatening allergies and not just food, but when I advocate, I advocate for the food allergies and insect allergies, medication allergies, and insect allergies, I encompass it all, because you have a lot of people out there that don't just have food allergies,

Dr. Whitehouse:

Right. And it's all equally dangerous. It's, it's bringing to mind the emergency in the South right now with the flooding and they need, epinephrine because of the insects being flooded out of

Amy Burkett:

Yeah,

Dr. Whitehouse:

that obviously people with food allergies maybe lost their medications as well. But from what I'm hearing, it's a lot of the people with insect allergies that are really at risk because they don't have their medications right

Amy Burkett:

the bees, the bees were, the bees were horrible down there.

Dr. Whitehouse:

I would love it if you feel comfortable. talking about the Epi Price Cap Act and for people who don't necessarily know the, the situation with that, could you describe a little bit about it and why there's, there's motivation, and action to do something about

Amy Burkett:

everyone knows the cost of EpiPens. they're astronomical, several hundred dollars as much as like a mortgage payment, you know, for a two pack, most of us need. Four of them, a set at home, a set at school. and it was not everyone's insurance covers them. so here in New York, the EpiPen price cap act passed and they're capped now at a hundred dollars. I believe that goes into effect. January of 2026. I'm not sure I can't be quoted on that, but it's huge progress. It's, it's huge progress to see because an EpiPen really only costs 7 to make. And so the price increase is just, it's a difficult thing to swallow when you know what the real cost is in it. Personally as an advocate, like with this EpiPen price cap coming and with Nephi coming down the line, like we really want to see EpiPens or Nephi in police cars and in fire trucks. they're usually the first people there. They beat the ambulance there how many times and seconds matter. That's a long journey. We're starting to work on that. so really think hard thing to get through. Some counties here in New York are doing it? Um, but many are not.

Dr. Whitehouse:

Yeah, and I want to throw in too, AviQ are the other

Amy Burkett:

Oh, right.

Dr. Whitehouse:

in our house that happens to be our favorite. but, again, same challenges. My son wanted to try the Neffy. So as soon as it was available, we called and got the prescription. And I think the insurance price for my household was just under 700 and we have pretty good insurance. so I think they have a, like many companies do, they have a promotion right now so that if, if your insurance amount is that much, then you can pay less, and I think that amount was maybe 200 for us, but it was the same with Abiqui when they first came out, they had a promotion to make it affordable. And now it's gone, and now none of them are affordable.

Amy Burkett:

I know it's it's I can't even imagine some of the families that like struggle to get it and when I was out Advocating and I would meet adults Some of them would pull out one and you know, my question would be where's the other one? they're like, well, I keep that one at home and I'm like you really need to have both of them with you and They're like I can't afford that. So

Dr. Whitehouse:

mm hmm,

Amy Burkett:

It's just um, it's hard to hear. You know, it's hard to hear.

Dr. Whitehouse:

And it's, it's just not for a medication that's so inexpensive. It is not a situation that anyone in this country should be

Amy Burkett:

Yeah. Yeah You

Dr. Whitehouse:

Do you think you'll go back? Will you do that event again someday in the

Amy Burkett:

yeah, I would, yeah, I would hope to go back and my son gained a lot from it. Just meeting, other kids with food allergies and being in that environment and feeling totally safe and being able to talk to. a couple other kids that just are experiencing the same things that he is and eating, being able to eat with them and eat freely with them was, it was quite an experience.

Dr. Whitehouse:

I always found that, um, I work telehealth now, but when I still had my office working with kids with food allergies, that was one of the most powerful things, was for me to work with their parents and obviously do it in a safe and trusted way for them to be able to come into my office and eat with me, was such a powerful experience with them because they're so limited sometimes with

Amy Burkett:

Yeah, when he can share his food allergy with other people, that are going through it, in my family. We have a c that have food allergies. it's such a joy to see hi and eating the same food us. so much because oftenti able to eat what everyone it's hard. It's hard as a To watch your kiddo sit there and, not be able to participate that, especially here in Buffalo food seems to be the center of everything. And they're really left out. I don't want to use the word excluded because we have substitutes for everything under the sun, but in many ways they end up being excluded. Unless everyone's eating the same thing, they truly are excluded. And I think it wears on them, especially at a young age. It does wear on them, so when there's an opportunity for everyone to eat the same thing, It's, it's just so nice to see his face, and he's just so excited about it.

Dr. Whitehouse:

I agree. Obviously with Halloween coming up, that's one of the big times where kids, you know, don't get to do that. unfortunately. So I was wondering if we could talk about Halloween and how you navigated and maybe ideas for families in terms of how they can do it depending on their situations.

Amy Burkett:

Yeah, so when he was very young, We took him trick or treating a couple times, but because he was so young, we were able to control the situation more, give the neighbors the enjoy life or the yum er, and then have it be done that way. And as he grew up, I had, trunk retreats. I organized trunk retreats just with my family, but my family's huge, so we'd get, You know, 40 people there and it was quite an experience. Everyone knew what to buy. it was so wonderful. And then two years ago, I, I, thought we would try switch, which where he was old enough to know. And his brothers were old enough to know, don't put your hand in the bag. If that Reesey cup package breaks open, which we know they do. They are so easily unwrapped in the bag. So. I felt they were old enough and, they had so much awareness that they could do this. So they ran free, they trick or treated. and I had three safe bags ready for them to do the switch switch. So they collected all the regular candy, didn't put their hand in there and then turned in those bags. And then I gave them the safe bags full of candy. Full of, you know, candy, and it was such a joy to see them trick or treat with their friends, I mean, I was crying, and it's just, like, this, at first, my oldest, like, I don't want to do it, I don't want to do it, and I'm like, this is an experience, like, I really want you to have, like, It's just, you know, you're a kid and I want you to have this and I, but I did say if you're really not comfortable doing it, you know, you can stay home and we'll just like pass out the candy and you can see it, you know, from that, from that side. but then he decided to do it and God, he had so much fun. He just, he just had so much fun just running and trick or treating with all the other kids. Yeah, that's a big deal.

Dr. Whitehouse:

that we do switch which two and it's to the point my kids were the same way when they were first able to do just regular trick or treating and now they're kind of, you know, that we live in Buffalo. As you mentioned, the weather's always cold

Amy Burkett:

Yeah.

Dr. Whitehouse:

freezing and raining here and my kids are kind of at the point now, which my oldest is 13.

Amy Burkett:

Oh yeah.

Dr. Whitehouse:

he's hitting that point. It's like, I think I'll just stay home and accept the candy from the switch, which, but my youngest loves my youngest is only nine. And he has. Lots of enthusiasm. He loves to collect as much candy as he can, and then we donate it to, you know, there are all kinds of organizations that will send it to the troops. And so that like kind of motivates them to to make the trick or treating not feel like a waste. You know, they're doing it with their friends. They feel so good about giving the candy. The unsafe stuff to,

Amy Burkett:

yeah,

Dr. Whitehouse:

you know, someone who can use it and

Amy Burkett:

yeah,

Dr. Whitehouse:

which is just so easy.

Amy Burkett:

yeah.

Dr. Whitehouse:

I'm, no fun. I like to, you know, give them non candy stuff and save their, their teeth and

Amy Burkett:

Oh, yeah,

Dr. Whitehouse:

a little bit from the sugar,

Amy Burkett:

yeah.

Dr. Whitehouse:

still have, um, in our freezer from last

Amy Burkett:

Oh my gosh.

Dr. Whitehouse:

But we

Amy Burkett:

That's great.

Dr. Whitehouse:

you were talking about their first trick or treating and ours, we did what you did when they were younger with Like neighbors and trusted people. I don't have a giant family here like

Amy Burkett:

Yeah.

Dr. Whitehouse:

what you do, you do, which is amazing. we would do some small trunk retreats when they were younger. And then, the first year we went trick or treating, we did the teal pumpkin

Amy Burkett:

yeah. Yeah. Oh.

Dr. Whitehouse:

And my son literally, he was so really little then, but he was literally running down the street with like his costume Cape flying behind him and yelling out, I'm trick or

Amy Burkett:

Oh. mm-Hmm?

Dr. Whitehouse:

And. You know, we might have only done seven or eight houses, but it was kind of like a little adventure to take that map and find the houses and They would be so excited when he would come up to the door and say, I have food allergies because a lot of people. are excited to offer this. A lot of them food allergy families themselves. And then some people will tell me nobody even comes and asks,

Amy Burkett:

yeah. The,

Dr. Whitehouse:

to have it anyway, but they would just dump like whole buckets and bowlfuls of goodies into his bag because they were so excited to be participating

Amy Burkett:

yeah. The deal.

Dr. Whitehouse:

fun experience.

Amy Burkett:

the teal pumpkin project is great. I'm seeing it more and more, which is just wonderful. now they have the plastic teal pumpkins. it's just, it's great. Yeah.

Dr. Whitehouse:

of, right, like boxes of teal pumpkin goodies that people can get and the pumpkins themselves, and I, I think at least the map in our area is so much more densely populated than it used to be, so.

Amy Burkett:

nice thing is, even the allergy safe candy, is sold so. many places. I mean, they sell it at Target and they sell it at the local grocery stores. They sell it at some of the, at Rite Aid even. I'll go in there and see the Yum Earth and it's just so great to see it So easily available now.

Dr. Whitehouse:

Right. It makes it so easy to do. For people who don't know, do you want to describe, what Teal Pumpkin Project is a little bit more and I'll put a link in the notes, but, so people can find it and understand what to do if they want to go that

Amy Burkett:

Oh Yeah. The teal pumpkin project. they sell the plastic teal pumpkins at, lots of different stores, or you can paint your pumpkin teal and you put it outside so that it alerts the allergy families and kids with allergies that you have safe. items available for them to get like trinkets, a little spider rings or stickers or pencils. There's so much out there and so much available. if you don't want to try to find the allergy safe food, kids just love those trinkets. My kids are nine and ten. They love the spider rings and the stickers. They put the stickers on their water bottles. It's super popular. the pencils, they love the pencils and all all that stuff is, a big hit with the kids.

Dr. Whitehouse:

I agree. And so, and then you, if you want to, print out. I always go on it's unfair's website. You can get the printable signs and I put them in the window leading up to Halloween so that hopefully families will notice, you know, that you can see in the window a sign that says, we participate in teal pumpkin and then you can register your house on the map online so that people can find you. And then if you want to trick or treat, you can print that map and go and find those

Amy Burkett:

Oh, yeah.

Dr. Whitehouse:

is

Amy Burkett:

Yeah. Yeah, it's really, they really did a nice job with that.

Dr. Whitehouse:

It's a good idea. obviously all holidays can be tricky for us. You, you mentioned to me earlier about getting ready already for preparing for Thanksgiving. I feel like Halloween, we're kind of getting

Amy Burkett:

Yeah,

Dr. Whitehouse:

and Christmas are a little more in our individual families. I think most of us have got it down, but societally, I feel like, We're nailing it with, with Halloween, at least for food allergies.

Amy Burkett:

has come a long way. I mean, this year for the first time, it's actually on their school flyer. The school does a trunk or treat and they have the Teal Pumpkin Project right on the flyer. And it was just so awesome to see that. That's

Dr. Whitehouse:

love

Amy Burkett:

piece of, you know, another thing that. just makes you, See the progression in the school districts, which really just We're getting there. It's

Dr. Whitehouse:

What a

Amy Burkett:

wonderful.

Dr. Whitehouse:

Yeah,

Amy Burkett:

Yeah,

Dr. Whitehouse:

I want you to talk about too. We were talking about all the advocacy that you do and we started in the schools, but you have done so much more since then. So do you want to tell

Amy Burkett:

Oh, sure. I am now, one of the board members with Greater Buffalo Food Allergy Alliance. we're a local group, in the Buffalo area. Pre COVID, there were, a lot of in person meetings happening. Then, of course, COVID hit, so things kind of just died down. Now we're finally seeing a bounce back. Getting out there and getting more in person events. we had our first big, post COVID function last May, we did an allergy awareness 5k event. And I, I like to use the word event because, We wanted, something, an activity for people to do while we were raising awareness. so people could walk, they could run, they could push, um, their kids in the strollers. It was really a family event. Even if you weren't an avid runner, so many people walked it. like I said, we had strollers there. We, We had EpiPen training there. we had, a couple other vendors come, to do some activities with the kids. we had all, we made sure that all the food donated was allergy safe. we had great, involvement from companies. We had 88 acres. We had red plate food. We had the Snyder's gluten free pretzels that are made in a peanut tree nut free facility. They're also egg free We had plain chips. We really wanted to cover all our bases so that the allergy community could come and feel safe And then the non allergy community, of course, they can eat anything. So they were just happy with all the food, this 5k had to offer. So it wasn't, it was such a nice blend of the two different communities and the raising awareness and seeing a lot of, people that really had no, awareness at all, getting EpiPen trained, asking questions you were able to join us which was so wonderful. I got so much, amazing feedback from parents of kids who were really afraid to use the OpiPen. They were, they just had like, um, like generalize anxiety over it. And I was getting feedback post event of how, just having the kids get trained and how it really calm them and they weren't scared anymore. And, it's just really great that we can get out there and we can do these, do these types of things and help. I had some newly diagnosed families, that really needed some help. They needed some guidance. Of course, we all can remember being newly diagnosed and standing in the grocery store and just crying because. you walk out of the doctor's office with what I don't know what to buy. I don't know what to do. I don't know what to cook and it's terrifying and every mom goes through that and you don't have that allergy community yet. You don't know any other moms. Maybe you do. I mean, back 10 years ago, I did, I really only knew One and it's just getting this information out there. Greater Buffalo, we're trying to do more. we're going to more couple community events, hoping to continue to, raise awareness.

Dr. Whitehouse:

One of my favorite parts of that event was what you mentioned, that because you didn't just do an allergy event, you made it a 5k. There were some more people there than I was expecting who were just runners who say it was a good weekend. I signed up for the five K to run who learned so much and we're kind of integrated with the all of us allergy folks wandering around. And I thought that that was a cool blend. of bringing people in with with an event. That's a popular thing people like to do.

Amy Burkett:

Yeah, that was my goal, because I think some allergy events are just limited to people with allergies. And I think my goal was to, like raise awareness to people that aren't in the know. So I kind of, we bounced a bunch Couple ideas back and forth and it just I was like, well, we have to do. something and I wanted to do a 5k There are a lot of runners in the Buffalo area It fell at the end of allergy awareness week and right before the Buffalo marathon so it fit into the training schedule and We did, we had a really good turnout. So I'm hoping it grows. We were lucky. We were very lucky to have Sean McDermott, the Buffalo Bills head coach, join us at the starting line and help us raise awareness and his presence there. I, it was just so true. It was amazing to have him there. I don't know if he knows. How, what an impact he had just, just being there and giving everybody high fives and he gave a little speech about the importance of allergy awareness. two of his kiddos have allergies, so he's, he knows. and it really helped us succeed, as a group, the Greater Buffalo Group. and hopefully we see it grow this year.

Dr. Whitehouse:

Yeah, I agree. And the comments from my kids their reaction to him being there and, giving some comments and starting the race off was like, wow, like somebody that important, somebody that, impactful in the world. That I see on TV on the weekends is, is here and thinks that allergies matter. And that to the kids was really, really powerful to see him kind of standing on their side. And so I did express that to him. I hope he knows how much it really does impact the kids, especially and the grownups.

Amy Burkett:

for sure. I mean, the grownups, they were just like, they were really amazed that he was there and they just loved it. And I know, I know having a figure like him, you know, kind of be out there with us on the front line and telling adults to carry your happy pens, you know, like, you know, It really, it really means a lot. And the goal to like raise awareness, it's just really help when you have like a, a person like him get out there and help us

Dr. Whitehouse:

Yeah. So tell us about next year's race, which I know you're already planning, and then talk to other people in other cities and areas who want to do something like this, as far as like, how do you start? It seems really overwhelming. You amazed me watching you pull this together. I don't know how you did it. but I think hearing from would help maybe some other people feel like, yeah, I could, I could do something like this, pull some people together and pull it

Amy Burkett:

Yeah, absolutely. So, years, years ago, I unfortunately can't run anymore, but years ago I was a runner, an avid runner. So I knew the process. I knew what was needed. We, got in touch with a local timing company, that was the first thing that we did, so that they had the, the finish line done, the course, picked out the course. Then on our side, for the advocacy piece, we needed a venue, so we, we were able to get a local store, Fatty's Beer Company, to host our venue. And then it was just a lot of work, emailing, calling companies, getting the donations, this, and of course the specific donations because we wanted safe food. we have a friend that has a hot dog cart. He was very happy to join us, Clifford's hot dogs. and we had a very lovely donation of chicken wings, anonymous, by, by a local pizzeria. That was so nice. And so it's making these phone calls. It's sending these emails, it's getting everything together. And we had the basket raffle. it's asking again for donations. And all of the money that we raised went to fair. food allergy research and education. and that was just that, You know, that was our goal to, to donate the money to fair this year. Greater Buffalo food allergy Alliance has become our own 5 0 1 C. so we are hoping that we can do more, get out there. Like I said, it's a lot of work. I had a great committee. I had a wonderful committee that was there to help., it was a huge group effort and we're lucky to have the people that we have.

Dr. Whitehouse:

You did an amazing job. And so you're already working on next year. Tell us the details of that and I'll link in the notes so that local people listening can find it and get the date on their

Amy Burkett:

Yep, we did launch the Save the Date already. It's Sunday, May 18th, 2025. At the end of Allergy Awareness Week. I think they did release that. So we're hoping that everyone wants to come again and, um, yeah.

Dr. Whitehouse:

And we'll be

Amy Burkett:

Yeah, awesome.

Dr. Whitehouse:

You mentioned that greater Buffalo food algae Alliance. I always want to say association, but it's

Amy Burkett:

Yeah. People do do that.

Dr. Whitehouse:

GBFAA in my

Amy Burkett:

TBFAA.

Dr. Whitehouse:

Um, you, so you, I think are, I know there are a couple of you working on this, but you've been one of the driving forces of. shifting it over to a 501 C. so tell me about that process and then what your vision is for taking our local kind of support group and doing more with that

Amy Burkett:

So we're just, we're in the very beginning stages. this year we were able to, like I said, just recently, a couple of weeks ago, we were able to visit a local high school and present there. we did a quick, a quick talk and then, the other board member Renata, she did the EpiPen training. we are attending, community resource night in our town here. So we were able to get in there. And then we, are also attending the Western New York, school coalition coming up in November. from that, we hope to get into a couple more local high schools. and just, you know, give a. Quick speech to the, to the kids. We were able to get into the lunch, the lunch period. So we were right there in the cafeteria and then the kids were free to come up on their own time. So we didn't take up any classroom time or anything like that. So it made it really easy. so that's, one of our big goals, like getting out there, raising awareness, conducting EpiPen training, which is huge. and that's where we're going from there. And then we have our big event, right now and just see how we grow.

Dr. Whitehouse:

I think that's amazing. And I think it sounds like so much, but you know, for people who want to take action, hearing you talk about these, these small steps, obviously it's a lot of time you're putting in, but it's kind of like just chugging along one thing at a time. We'll call this school. We'll try to get in here. We'll, you know, I think you can, momentum once you're developing the relationships and kind of a routine. I hope that other people will be inspired to do what you're doing in other places

Amy Burkett:

yeah.

Dr. Whitehouse:

so many Mostly moms listening from what I'm hearing who want to do something and just feel so overwhelmed with their own lives They don't know where to start and you have you're so amazing the way you

Amy Burkett:

Thank you

Dr. Whitehouse:

this. I love it

Amy Burkett:

Yeah. I mean, that's what we're there for. We're here to help. We get a lot of 504 questions. and here we are in 2024. And I think in some ways it can be hard and often disappointing when I hear things and I get messages from people, it's disappointing, but it's knowing that there's hope and progress is happening and change is coming and it's easy to get down, but just staying up and positive and continue on with, with our awareness movement and our mission and hoping that we reach these districts and, The top administrators, and then it trickles down to the teachers. I mean, believe it or not, we still have a lot of teachers that just really don't have any awareness. They might be, they may be EpiPen trained, but they really don't have the awareness piece.

Dr. Whitehouse:

Yeah. Well, not anymore because part of the work that the parent group that you were a part of in the district where we live in your kids go to school. worked with someone in the district and we're going to have her on the show soon and on almost all the teachers in the district. to hear us talk about food allergies and not just here's your EpiPen and here's what to look for, but to understand kind of the impact. So I, I'm excited to have her on the show too, to talk about, her perspective, but that to me, that's

Amy Burkett:

that's huge. We're lucky here. Very, we're very lucky here. And I'm hoping that other people can, I don't know, maybe pick up this. I think it's easier when you have a couple, a couple of people with you taking it on alone is. It's very, very difficult and it's when you find those other parents and you establish that little group,, once you start and just don't stop, you can really make progress and then you and then our assistant superintendent, she's wonderful and you get together and you get your team and you just keep going.

Dr. Whitehouse:

I want to just suggest that people don't know where to start, to just look for the local, a local allergy support in your city or your state, And if there's not one, you can always just start, a group on social media to connect with local people because there's tons of groups. I know we're all in a bunch of them, but it's the local ones like ours in Buffalo and we used to travel to Pittsburgh a lot for medical treatment and I'm in the Pittsburgh

Amy Burkett:

Oh, yeah.

Dr. Whitehouse:

you know, to find restaurants to find other parents, which doctor is doing what in which office like it's those local conversations about this ice cream place is doing

Amy Burkett:

Yeah.

Dr. Whitehouse:

Don't go here. They treated me like this. I think that's when you start to settle in and where you can make the connections, like you're talking about, like, all right, let's, let's team up and let's take this on

Amy Burkett:

Yeah.

Dr. Whitehouse:

to get the district to listen to us, the school district, or, or there might be other organizations in addition to schools and communities that where there is education that's needed. And like you said, that's how you can find your

Amy Burkett:

Yeah.

Dr. Whitehouse:

who are motivated.

Amy Burkett:

I think searching, just getting on social media and looking for those local groups and going from there and just finding a couple of their parents that wanna. Do something like this. I, I, I've seen other walks. I think, I think we may have been one of the first or only 5k. but they're there, they're out there, they're definitely happening. And even if it just takes two or three people to do it and you, and you can do it.

Dr. Whitehouse:

Definitely, What else do you want to tell people about? What didn't we get to?

Amy Burkett:

I, I think that's, I think that's everything. Just, yeah, stay safe. Stay focused on the mission. Raise awareness and get people carrying their EpiPens and the younger kids to talk about it and advocate for themselves. Get their friends on board. It's, it's really a big change for your kiddo to have that support. It really is. And if, if you don't have it, hopefully you can get it.

Dr. Whitehouse:

Yeah,

Amy Burkett:

Hopefully your kid can get it.

Dr. Whitehouse:

You created it.

Amy Burkett:

Yeah.

Dr. Whitehouse:

you just made what wasn't there for your kiddo. And I love

Amy Burkett:

Yep.

Dr. Whitehouse:

My last question I like to ask everyone is tell us something great about having food allergies in your family.

Amy Burkett:

I think, it can bring a lot of people together and it can teach empathy to the siblings that don't have to navigate the environment on a completely different level, his, younger twin brothers. I see the empathy and then I see the understanding and I think that that then can be extended to other disabilities, and teaching kids to have that empathy. It's important nowadays that, I think sometimes it's lost in society and it's, this is a way to help a comeback and it's not just, food allergies, there are many disabilities out there and I think this is one, that the siblings and other family members, can learn how to be empathetic and supportive for so many other disabilities.

Dr. Whitehouse:

thank you so much for taking the time to talk.

Amy Burkett:

thanks for having me.

Dr. Whitehouse:

Yeah, we'll be looking forward to the race next

Amy Burkett:

Absolutely. We're super excited

Before we finish for today, here are your three action steps that you can take. To get involved in allergy advocacy. Number. One, if you are anywhere near Buffalo, Western New York, Northwestern, PA. Even Eastern Ohio, mark your calendar for May 18th. 2025 and join us in orchard park for the allergy. Awareness action 5k. Number two find. Find and join a local allergy support group for your city, your state. The area. Area specific recommendations and support that you can find here as well as the possibility. Of meeting your allergy. Friends in person is so reassuring and comforting. If you're lucky there will be an allergy awareness event. Close enough for you to attend. Attend. And if not, maybe you'll make. Some friends who want to start one. Number three participate. And the teal pumpkin project. It isn't too late to print signs from. The fair website, register your house on the website map and. By some non-food treats and courage, your friends, family, and neighbors to join. Join too. And if you have little ones at home, check the map in your area to see. See how many other people care about kids with food allergies to. the content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda White house. Thanks for joining me. And until we chat again, remember don't feed the fear.

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Amanda Whitehouse, Ph.D.

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