The Food Allergy Brain Episode 9: Thomas Silvera

This episode is sponsored by Abe's Muffins! Shop at abesmuffins.com

This week on The Food Allergy Brain, Mia sits down with Thomas Silvera, co-founder of the Elijah-Alavi Foundation, a public health advocate and certified surgical technologist whose life changed forever on November 3rd, 2017, when his son Elijah died from a preventable allergic reaction at a New York City daycare center. What followed was not silence, but action, and Thomas describes it as grief with a direction.

Thomas shares who Elijah was as a little boy: joyful, independent, always running, always smiling, and known for saying "make a hand, make a hug, make a kiss" whenever he needed comfort. He opens up about navigating the grief while immediately stepping into advocacy, explaining that the inaction felt unbearable. The conversation explores post-traumatic growth, the emotional toll of retelling Elijah's story in legislative rooms, and how Thomas balances running a nonprofit with being a doctoral student and a father to Elijah's older brother, Sebastian.

Thomas walks through the legislative journey behind Elijah's Law, now passed in six states and two cities, including what it took to get it signed in California after the governor initially rejected it, and why Maryland moved it in just a matter of weeks. He also speaks candidly about health equity, why Black and brown communities face disproportionately severe reactions and fewer resources, and what it would truly look like for food allergy advocacy to center equity.

Thomas Silvera's handles:

Instagram, TikTok & X: @elijahsecho

Website: elijahalavifoundation.org

Find Mia Silverman (Allergies with Mia):

Instagram & TikTok: @allergieswithmia

Website: allergieswithmia.com

Transcript

SPEAKER_01 0:00

This episode is sponsored by Abe's Muffins, but more on that later. Welcome to the Food Allergy Brain. I'm your host, Mia Silverman, Food Allergy Advocate, Cent Creator, and Master's student in clinical psychology. This podcast explores the mental and emotional side of living with food allergies through conversations with experts and people doing important work in this space. Before we begin, please remember that everything discussed on this podcast is for informational and educational purposes only. It is not medical advice. For questions about your own health, food allergies, or treatment, always consult with a qualified doctor or medical professional. I want to share an important content warning. Today's episode includes a deeply personal conversation about the loss of a child due to anaphylaxis, so please listen with caution and care. For today's episode, I'm truly honored to welcome Thomas Silvera, father, public health advocate, and co-founder of the Elijah Alavi Foundation, a nonprofit created in memory of his son Elijah, who was tragically lost to a preventable allergic reaction at a daycare center in New York City. In this episode, Thomas shares the story of who Elijah was, how grief became the fuel for a powerful advocacy mission, and how that mission led to the passage of landmark legislation protecting children in childcare settings across the country. We also talk about the emotional complexity of navigating grief and advocacy at the same time, post-traumatic growth, what it means to tell a painful story over and over again in service of something bigger, and what Thomas wishes every food allergy family knew about managing fear without letting it take over. Without further ado, let's get into today's episode. Well, Thomas Silvera, welcome to the podcast. It's an honor to have you on here today. And just thank you for all you do for the food allergy community with your advocacy work. We really appreciate you. So just thank you for being here.

SPEAKER_00 1:57

No, no, thank you. And um I am truly honored to be here and speaking with you. Like I said, I truly appreciate it. So thank you for allowing me to have this platform with you to talk about my story, our journey, and why we do what we do.

SPEAKER_01 2:13

Yes, thank you so much. Well, I'd love to begin, you know, for listeners who may not know you yet, could you just share about who you are and what the work that you do?

SPEAKER_00 2:22

Oh, yeah. No, definitely. Like I can tell you, um, well, first off, my name is Thomas Verr. I am a father first, and you know, I'm also the co-founder of the Elijah Lovey Foundation, public health advocate. I am a certified surgical technologist that people don't know about. My work today is rooted in the live experience after the loss of my son Elijah, and you know, to a preventable allergic reaction at a daycare center he was at in New York City. And, you know, from there my life shifted from the grief into advocacy, and and now we focus on food allergy awareness, asthma awareness, education, and community outreach. And Elijah LV Foundation was created in memory of our son, and and at its core, it's about protection, education, and policy and community outreach to create change.

SPEAKER_01 3:17

Well, I just want to first to say that I know you probably hear this a lot, but I'm I'm very deeply sorry for your loss. And I can't imagine, you know, being in that position, but I really admire how you've been able to turn such a you know devastating, tragic, huge loss into something that's so impactful and going to be saving so many lives in honor of your son. So I want to just you know acknowledge that and so I appreciate you being here and and sharing that and just all the work you do. So I'd love to kind of get a bit, you know, more with your foundation, the Elijah Olive Foundation. Can you just tell my listeners like what this foundation is, like what it does and what it and what it like, yeah, like what it does?

SPEAKER_00 3:59

Yeah, so the Elijah Olive Foundation was built off you know the grief of the loss of Al Sider. We started this organization in 2018. We actually started it before we became an official non-for-profit in 2018. And the goal was to actually start the organization when our kids were actually born. It wasn't going to be named after Elijah, it was just going to be an organization named where we can, you know, advocate and create awareness. But, you know, soon after, you know, we needed to we had to do something. So the Elijah LV Foundation is created, and again, it's rooted in bringing policies and bringing change to food allergy education, especially when it comes to the childcare centers. Dina, who was Elijah's mother, in her grief, was able to look into policies in New York City and New York State and notice that there were no guided protections for children in childcare centers, only through K-212. You know, we there's a voluntary guideline from K-212, but nothing that actually protected the most vulnerable, which in the Childcare Center. So we acted on that and worked with our local legislators in putting together a policy that'll actually protect the young children. So we were grateful for it. And in that kind of like spearheaded the organization and also worked in that part in getting the law passed in 2019 and signed by the governor, which was the very first in the nation and the first in the country to have a mandate like that, such for childcare centers.

SPEAKER_01 5:32

I can't believe that it's only like this is now a thing, like this was never put into place beforehand. Like that is really I had no idea that there weren't any laws prior to this.

SPEAKER_00 5:42

Yeah, yeah, yeah. It's it's one of those things that you you think about that why wasn't a law like this put into place? And there's a lot of factors that can go into it because there's a lot of regulatory issues that goes into childcare centers, who's governing it, and and so forth. So it's still baffling, and that's why we worked, you know, tirelessly to create change across the country to try to close the gap for the childcare centers to have these protections in place to keep the children safe.

SPEAKER_01 6:11

Well, the work you're doing is really important. We definitely need that for sure. So I'd love to go back in time a bit before November 3rd, 2017. Who was Elijah as a little boy? What was his personality like?

SPEAKER_00 6:24

What made him Elijah was such a phenomenal young little boy, you know. Him and his brother. I call them the dynamic duel because they were like hand in hand with each other, you know, and it and it breaks my heart even to this day to know that he's not with his older brother Sebastian. So Elijah, he was full of joy. He was very independent, such for a young, a young kid at his age, and he would just bring light just about him and always smiling and always curious and full of energy. I I will call him Choo Choo because in the morning, when he wakes up, you can hear his feet plop down on the floor very heavily, and then he starts running. So it sounds like a locomotive like coming from his bedroom. And and I will always call him Choo Choo, like a choo-choo trade, and you know, he's just full of joy, and he had this autonomy about himself that he wanted to do everything for himself and not look for help. And you know, that that was like that light he bought into every room, and him and his brother together, they would they would just that beam that just set a different energy for our family and for so many that was like in their presence.

SPEAKER_01 7:39

Well, thank you for sharing that. I mean, I feel like that kind of embodies what your nonprofit is, is a light, is hope, and that's really beautiful. And so, you know, he has had food allergies, and so what was it like managing that? Like, did you feel like you overall like you and your wife had a handle on these allergies, or was it very difficult? What was that like?

SPEAKER_00 8:03

No, I think we you know, we I'm a food allergy. I have food allergies, I'm also allergic to medications, I'm an asthmatic. Um, Dina's Elijah's mother, Dina, she also has food allergies. So we we understood it. I understood the anaphylaxis part, I understood like everything that goes like Elijah had not just food allergies, he also had eczema, he also had asthma as well. So, with that understanding coming from us, we knew how to handle that situation. So we were able to kind of like manage it and mitigate any risk within our own household and also outside. So we were able to, you know, remove foods from the house that they can have, foods that we would love for them for them to have. We also learn how to cook those safe foods for them as well. So it it didn't like stop us in terms of managing the allergies. It's just we just learned how to they kind of like work around it because all it takes was like we don't we didn't want it to be like one mistake that changed the whole entire narrative within our home, or even working with family members and friends, having that understanding with them so they can manage, you know, our children's food allergies within their own spaces as well.

SPEAKER_01 9:17

Wow, I didn't know that you also had allergies. That's uh so that definitely makes it probably easier not to navigate that as an allergy parent because usually when parents have kids with allergies, they don't have allergies themselves, so that probably definitely made it more easier for them to like learn or figure it out. You kind of already knew what to do, pretty much, right?

SPEAKER_00 9:35

Yeah, no, absolutely, because it's like even when the first time we had to administer epinephrine to Sebastian or administer epinephrine to Elijah, it's like knowing how to do that and not having that fear to give the epinephrine to them, you know, save their lives, you know, and that's one of the reasons why we we keep pushing for these legislations because we want to remove that fear from the educators and from parents, especially when they drop their kids off at school.

SPEAKER_01 10:04

Absolutely. And so, you know, after you know, the the tragedy that happened with your son, you know, a lot of people who experienced such a profound big loss, you know, retreat inward. And you did the opposite, your wife did the opposite and went public and legislative almost immediately. What was that, you know, like for you? Like where did that come from?

SPEAKER_00 10:28

It's yeah, honestly, I don't know where it came from, but I know for me that drive came from the love and knowing that Elijah's death should have never happened. And once that shock settled enough for me to breathe through it, and the same thing with Elijah's mom, is that there was this deep knowing inside us that could not allow his story to end just right there. You know, I don't think anybody wants the loss of their child's story to end exactly where that where it happened. So we couldn't just like sit with the pain or do nothing about it. So while knowing other children could be at risk, you know, in the same exact way, it wasn't about being strong, it was about being compelled. Like I we I felt compelled like towards the action because the inaction felt unbearable. So I I knew that I had a voice. I knew if I had a story, if I had an opportunity to reach out to lawmakers, advocates, you know, systems, you know, managing how can we work around these systems, then I had a responsibility to do that. And I didn't want another parent getting a call from like their school. And that and so with understanding that that became the few. And advocacy became something of a form of love and emotion, as you can say, and it became a grief with a direction, you could say.

SPEAKER_01 11:59

Wow, that's that's a good way to put it. I mean, I feel like you know, grief and advocacy are two very different, like emotional experiences, and so having to navigate both at the exact same time is you know, a lot. And so do you feel like you know, navigating this grief and then also advocacy journey, like you think it helped each other? Do you feel like at times it was harder at certain moments?

SPEAKER_00 12:22

Oh wow. I mean, they definitely do both. Like there are days when advocacy gives me basically gives my grief a place to go, you know, when I'm dealing with it. And it also gives me a purpose and it reminds me that you know again, like Elijah's life's still is impacting the world in a meaningful way. And on days that advocacy on those days, like the advocacy helps me breathe. It helps me feel like, you know, the pain that I'm feeling is being transformed into a protection. But there's also the days when you look at how grief and grief and advocacy, you know, can pull against each other because advocacy offers require us to continue revisiting exactly what happened, right? So it's re-exposing the wound. And then we are constantly telling this story and then revealing details and explaining and you know, in depth of the preventable nature of what happened. And also like you look at the carrying and the emotional weight that comes from this, you know, and going into rooms that don't always understand the depths of what we're carrying. So navigating both of the grief and advocacy is by meaning is like learning that learning that we can be committed and still be tender with what is happening. And like I can speak publicly and still have private pain. You know, and I and it happens all the time when I'm speaking in places, and I can advocate and still admit that some days it hurts deeply. There's days that I don't want to do this anymore. But I know there are days that when I wake up and I see my son's photo or I see Sebastian, you know, my other son Sebastian, when he calls me, I know I have to keep pushing past that. You know? So I don't think the goal is to make grief in advocacy uh tidy in a sense. I think the goal is to honor both, you know, honestly. You know, I was like going through that it's it it's it's a heavy burden, you know, with it, but at the same time, there's uh there's something inside that keeps pushing us forward.

SPEAKER_01 14:32

I mean, I think that what you're doing is a huge act of love, like for your son and for for both your sons, honestly, both for Elijah and Sebastian. I think that it definitely is really heavy and hard. And I think that it's important to like give yourself the space also grate priorities. I think I'm glad that you're able to like kind of have that. I think that's so important. You know, do you feel like well I guess I'll bow top? There's a concept in psychology called post-traumatic growth, which is the idea that people can find meaning and transformation through suffering. Do you feel like this kind of describes your overall grief and advocacy journey, or how would you describe it?

SPEAKER_00 15:12

I mean, yeah, I I do see it like that. Like I do, like with care, I do. I never want growth, want the growth language to make it sound like the trauma was somehow worth it or acceptable. It's not. Like losing a child is devastating and it's not a part of of life that any parent wants to be a part of. Like there's nothing redeeming about the kind of loss that itself that we endure. But I do believe like when it comes to being human, it can create a a meaningful create meaning from what we survive from. And for for that, it it's like that meaning is has has to come through action, service, legislation, education, and community. And I have grown in ways that I could have never asked for. Like I've never foresaw myself being in this position today. I didn't ask to be here, but there is a reason why I'm here. And like I become more aware, more determined, and more compassionate and more intentional about the work that we do, about the lives we can still protect. So, yes, I mean, I do believe that it it has been considered post-traumatic growth for us, not because of the pain that you know disappears, but because I choose not to let it let the pain be the end of the story for my son. Exactly.

SPEAKER_01 16:33

You're trying to kind of continue his legacy and honor him, and I think that's that that's so important. I think that you know, grief never goes away, it comes in waves. It kind of is grief is just a really weird, complicated thing. And so I think that, you know, no one wants to be in the position that you're in with losing your son, but I really can admire how you've been able to you use your your story, your son's experience as a way to create change in honor of your son to keep his legacy alive and save more lives, because I again I'm shocked that this was not even a law or anything like this was put into place.

SPEAKER_00 17:14

Um it's it's one of the things that is baffling to us that such policies and legislation across the United States, you know, we've worked closely with AFA in creating specific tool kits and everything, but when it comes down to the grief and everything, I remember a point in that part of the grief and finding out about the loss of our son, going through a phase psychologically what they call it called tachyphagia, which, you know, going through this moment of feeling like everything is moving fast or moving slow and not knowing where time is. So learning how to pull myself out of that type of mental state was challenging because I knew I had to get back to a point where that dealing, you know, trying to be there for Elijah's mom, trying to be there for Sebastian and be there for myself, there was a part that I had to shut grief off temporarily in order to be in the moment to make sure that Sebastian is protected, his mom is protected, you know, and and then once I had to shut and shut it back on, you know, there's that's that that's still that heaviness that I'm still dealing with today.

SPEAKER_01 18:27

Yeah, I mean, I'm sorry, I'm like crying, I'm just I'm very, I'm very moved by your your story, and I just you're really strong. Like that's really, really hard. And I and I really you're really even if you're not strong by choice, you kind of have to be in a situation, and and being strong is exhausting. Um but I just thank you for sharing that, for being super open. You know, kind of going back to because you mentioned kind of earlier in our conversation about having to tell Elijah's story to, you know, like hundreds of times, to legislators, the media, like even right now. Like like how like that must be really hard. Like, does retelling the story re-traumatize you? Like, how do you protect yourself emotionally when you when you have to do this in different settings?

SPEAKER_00 19:12

I think I can start her first is like Elijah's mother and I, we saw this story, we saw this play out differently. I wasn't there when everything happened. Elijah's mother was there in the basically inside the death of everything. Because she was there while he was going through the anaphylaxis. She had rushed him to the hospital and being there and being there in the hospital with him and seeing and hearing his last words. I was coming from work, and by the time I got to the hospital it was too late. In that moment, it's like nothing felt real. Everything just seemed totally blank, and when I go back to the tachyphasia, it's like that moment nothing, nothing seemed real. It just it it was something that I'm still trying to wrap my head around because we're experiencing this we're both two people who experience the loss of a child but experiencing grief differently. You know, and absolutely there are moments when telling a larger story feels like reopening something raw. Some days, like I said, I can tell you, you know, it's with steadiness, and and others' days one sentence can't hit differently, like I'm telling you right now. Like grief doesn't move in a straight line. The way I protect myself emotionally is by staying rooted in why I'm telling it. And it's my healing. It reminds me that this is not storytelling for attention. That's not why we have the organization. It's not about attention, it's not about being known as, you know, it's not about that. This is a testimony for change. And I also try to check in with myself. I see a mental health therapist because you know, if I'm depleted, I have to make sure I honor that by seeing someone. And if in if I need a moment, you know, I can take it. And if something feels especially triggering, I can acknowledge it. And like support systems that come within this is like where you having like good people in your community, family members, having faith, having you know, all these things, and honestly, you know, giving yourself permission to still feel human. Feel human, literally, no matter what. Because advocacy doesn't cancel grief. If anything, you know, it requires even more attention, emotional, with the care that comes with it.

SPEAKER_01 21:38

That's I mean, absolutely. I was I was just gonna actually ask about how you, you know, cope with this. And I think that um, you know, it's so important to get that support and seeing a mental health counselor and having a strong support system. And you know, I I wonder too, obviously this is more personal, we don't have to answer this question, but I wonder if this, you know, has also brought you closer to your wife and to your son Sebastian and you know. Yeah.

SPEAKER_00 22:01

Like Sebastian, I mean Elijah's mother and I, we're no longer together. You know, we've been, you know, grief plays a big strong role into this. And that's another thing that people understand how grief can affect relationships. And but we are amazing co-parents with our son Sebastian. We are amazing leaders in this space, and we run this organization as if this was our son Elijah. You know, so our support system is very important to us. Like I said, community is important, like the faith is important, having people around us to understand like that we are carrying both omission and mourning at the same time, which is huge. So if you look at mental health for me, you know, it hasn't it hasn't always meant in like learning to pay attention to my body and mine. And I get trauma lives in both. Sometimes that minor like that that means a setback if it has to happen. And sometimes it means resting, and sometimes it means quiet time. You know, I think one of the biggest lessons we've we've learned from this is that you cannot pour your pour into pour from an empty place when your work is rooted in pain because you know self-care is not optional, it's necessary while we're doing this.

SPEAKER_02 23:21

Wow.

SPEAKER_01 23:22

Wow. Um sorry, like regroup myself. I mean, I just no, this is about yourself. Like I don't want anyone that's crying here, but I think that it's so important to, you know, take care of yourselves. And again, like going, I mean, the work that you're doing is so important. And I think that because there's such a strong, like it's such a like a story behind, not like a story because it's a real situation that happens, it's really heavy. And I just really applaud you for being able to one, like, do what you're doing while navigating all this grief and then you know having to co-parent. I'm glad that co-parenting has been like a success because that can be really hard when you go through such a big like loss like this. So I'm glad that in that regard it's you know has been like manageable. You know, just generally speaking, for for parents that have food allergic children who live, you know, in a constant state of anxiety and just hypervigilance, like what what would you say to them about managing that fear without letting it consume them? Because you have allergies yourself, so you have that other perspective too, and you're also an allergy parent.

SPEAKER_00 24:39

Yeah. No, it's again, thank you for that about the grief and how you know with family and everything. Like I said, we're great friends, you know, to this day. You know, we both moved on with our lives and everything, but it doesn't take us away from the mission and the love that we have put into this, you know. So thank you for acknowledging that, you know. What I can say for parents, kids with who are food allergic children, whether, you know, it's like I would say like your fear is definitely valid. I know people say, you know, let's not put fear into, you know, having food allergies. It's like, but we're always going to have that fear, you know, and we're not, you know, you're not overreacting. I don't, you know, late in parents, you're not overreacting. You're caring for we're carrying real responsibilities. And that comes with e with an emotional exhaustion. You know, food allergy parent requires like levels of awareness that many people don't fully understand. And but I would also say this is like don't let fear become the only thing like your family breathes when it comes to having a child who has uh food allergies, whether it's um I whether it's EOE, whether it's uh F Pies, whether it's AlphaGa, whatever it may be. You know, be prepared, you know, because you know absolutely like educate yourself, ask questions, advocate for your child, make sure that people know how serious this is. You know, carry your emergency medication, build your systems whether from support, you know, but also allow yourself a moment of life, joy, and definitely breathe. Because fear can be useful when it leads to preparedness, but it also becomes harmless when it steals your ability to live. So, like I would encourage like parents to build confidence through their education and their support systems, you know, going, making sure you find the right resources that can help guide you and navigate you. Community is big. You know, we have such a big community that people are not familiar with, and that's why we keep pushing the messes out. The knowledge helps, you know, practice helps. Like you don't have to live careless, you know, but you also don't have to live like completely consumed by this.

SPEAKER_01 26:52

Finding that balance is kind of important. Um that's a that's a really great answer. I think that's a real it's also really helpful for allergy parents who are listening to this right now because I think it could be so hard. So what you said, I think is it's it's you know, it's true. I think that it's an it's it's normal, it's human to have those fears and concerns as it's your child, but it's also important to let it like can take over and finding that, as I said, balance. That's uh thank you for answering that question. Thank you to Abe's Muffins for sponsoring today's episode. Abe's is a go-to brand for food allergy-friendly treats, whether it's everyday snacking or celebrations. They make mini muffins, cupcakes, brownies, iced cakes, and more. My personal favorites are the blueberry muffins and the mini iced cupcakes. They're all free from dairy, eggs, peanuts, treanuts, soy, sesame, and even pea protein. They also have gluten-free mini muffins that are free from the top nine allergens. What really sets Abes apart is how seriously they take safety. Their West Nyak facility is dedicated free from dairy, eggs, peanuts, tree nuts, soy, sesame, and pea protein so you can feel confident about what you're eating. Because for Abe's, food allergies are personal. The real Abe was born with serious food allergies to peanuts, tree nuts, eggs, dairy, soy, and sesame. Tired of seeing him left out at birthday parties and school events, Abe's dad and uncle launched the Abe's brand and have been running it for 10 years. On top of being allergy friendly, they focus on simple, all natural ingredients, never using any artificial flavors, dyes, or yucky preservatives, creating treats that feel homemade, but the convenience and reliability of something you can pick up at the store. And moist, importantly, they taste good. Aves has really cracked the code on allergy-friendly baking that everyone can enjoy. Whether you have food allergies yourself, your friend has food allergies, or you're just looking for a better-for-you sweet treat, you'll love Aves, trust me. You can find Aves at retailers nationwide, including Whole Foods, Sprouts, and Wegmans. Just look for the bright colored boxes in the bakery section or check out their store locator online to find them near you. You can also search for Abe's on Instacart, which is a great new way to see what products are available near you. For New York City residents, you can also order them for delivery through Fresh Direct. Thank you again, Abe, for sponsoring today's episode. Now let's get back to the podcast. So I'd love for you to walk me or walk our listeners through how Elijah's law went from an idea to a side bill in New York in 2019. It was 2019, right, when it was first signed. Yeah. And and what did the process look like to get this signed? Because it's a it's a long process to get these laws done. So how did that go?

SPEAKER_00 29:34

Yeah, I always say that it always looks easy when the law is passed, but the work, you know, it gets you have to, you know, start the development of that in terms of like, you know, finding the right soil, looking, checking, making it sound like finding the right soil and the right seeds to be planted, right? Because on the ground, it looks like persistence, right? It looks like telling a larger story over and over again in rooms where people are needing to understand not just what happened, but why it should never happen again. So, and it also means by sitting with lawmakers, educating them, like with the educators from the first law that was passed, they had no knowledge of what food allergies was and what they could do. But we made it happen. So it's helping them understand the gaps in child care and also making the case that food allergy preparedness in childcare is not optional. You know, we've learned that it's an emotional work, but it also has to be strategic work. And it's meant by building relationships and identifying champions like you and advocates all around the country and staying consistent. And it also means in like for us is taking the grief and translating it into policy where the language could create real protection, especially with the most vulnerable of children. So a bill doesn't just become a law, right? It doesn't just become a law.

SPEAKER_01 30:57

I wish it wasn't.

SPEAKER_00 31:01

It would be the easiest thing, you know. But it becomes a law because people keep showing up for it. People are advocating for it, and that's what the process looks like. You know, showing up, speaking up, and pushing forward and refusing to let the urgency be ignored. Because that's why laws like this exist. Elijah's law exists because of people like you, the advocates, the organizations that support such legislation, because we don't want to see another child lost. We don't want to see any individual lost due to something that was so preventable.

SPEAKER_01 31:35

I mean that I mean, and now you've had this law passed in six states. You've had it in New York, Illinois, Virginia, Maryland, California, and Arkansas, which all those things have very different political landscapes. So like what it's been it's how what was what's been the hardest fight to get this passed? Like it like this again, each state has its own different you know, yeah, political landscapes.

SPEAKER_00 32:03

This is navigating this process. Again, we you know, it's a it's a bipartisan bill. You know, we had all legislative Democrats, Republicans looking for this law to move. The most challenging one was California. California was challenging for us because we went in for the second time. The first time it it passed both the House and Senate, but the governor didn't sign, and it wasn't because of the bill, it was because these entities involved didn't agree on a specific language, so we had to go back and we waited a year before we reintroduced it. And we make sure that prior to submitting the legislation, we talked with these entities to make sure we're all on the same page when moving this bill forward. And we didn't really have to sit for a lot of community hearings or you know, to move this bill, you know, thank goodness. But California was the most challenging one. New York.

SPEAKER_01 32:57

That's surprising to me.

SPEAKER_00 32:58

You'd think that California would be more on top of their game, but I guess Yeah, they're very progressive, you know, but you know, and I understand, like, you know, the bill not passing the first time, there's an understanding, and we went back and we made sure we gave it time before we went back to reintroduce it. And sometimes you have to give a little to get a lot back, and that's what we did. And you know, I'm grateful for that. I think our fastest bill that we passed was Maryland. I think Maryland was a couple weeks and it was signed into law, which was like, Wait, okay. But like I said, each state brings its own challenges. Some are difficult because the political climates, some because of misconception around food allergies, some people have this weird narrative of what food allergies are, some because of the bureaucracy, some because of you know, urgency gets lost when lawmakers haven't personally experienced the issue. So one of the hardest fights I know are often ones that when you can feel that people care, you know. That's one of the hardest fights of that. One when people care, it's like, but they still don't fully understand the stakes that come from it. And I've sat in many meetings with that. So once someone sees food allergies are rare and manageable, or personal family issues is issue instead of a public health and safety issue, that becomes a barrier. So the and again, the other hardest part is often not just passing the bill, it's shifting the mindset. It's helping people understand that something like this type of prevention saves lives, and that childcare safety should never depend on luck. And, you know, although we passed six laws and we passed two city ordinance on top of that, so that gives us like eight pieces of legislation under the foundation belt. But we couldn't have done all these laws without these organizations that that work with us in in support and partnership with us. We we couldn't have done it without the advocacy of these families and community leaders, you know, coming forward and giving their testimony and everything. Like we as an organization, we serve the community, and that is the very paramount of what we do. Is we're here to serve you because we are community, and we constantly stress that over time.

SPEAKER_01 35:14

That's wow. I mean, it's such a such a journey. I mean, thank you for sharing that. I think the way of framing it.

SPEAKER_00 35:23

It shouldn't it shouldn't depend on luck, you know, no when it comes to this. It's like it's this is a very important part of legislation that we're we're looking to push forward in every state as you know as much as we can.

SPEAKER_01 35:39

Yeah, I mean it seems like the ultimate goal is to have this be like not like a national law. Like what would that realistically take and how far what do you think we are from it? And how can our like our my listeners help? Like, what can we do to help make this happen and help support this?

SPEAKER_00 35:59

So right now I think the step that we're taking going state to state to state has been easy of uh easy for us to navigate um because you know we find the right legislator to work with, and we don't just let the legislator pick it up and then wait. We actually work hand in hand with these legislators. We set up meetings, we have an advocacy team, advocacy leaders that sit in these meetings and work with these legislators and see it through to the very end. If it gets passed, if it doesn't get passed, you know, we're okay with it. But it takes a lot because again, when it comes to K-212 and childcare, they're both the regulatory systems are different. You know, how K-12, the you know, you know, the Board of Education, Department of Education runs that, and different entities like the children of family services, the Department of Children's Fabric Family Services, then most of them run child care centers, regulatory systems again or different across the country. So how to how can they get involved for the listeners is like they can go to our website and look under Elijah's law, send us a message via our website at elijahlabfoundation.org, and we'll send you the toolkit that we created with Asthma Analogy Foundation of America that literally breaks it down like how to get this law into your state, you know, and find again, it comes down to finding the right lawmaker to make this happen. You know, because the ultimate you know, it's one of the things that we want to do with that.

SPEAKER_01 37:27

And I think just uh being consistent, like you said, constantly showing up, like having people there to help, you know, like amplify this. So that is really helpful. So I'd definitely like the link in the description of the podcast, like your website, as well as your social medias and everything, so people can support, you know, what you're doing and then be help participate, donate, be involved. I'd love to transition more just about health equity and just underserved communities. I think that's a a serious issue in this country, especially. When you've spoken openly about just the fact that black and brown communities bear a disproportionate burden from food allergies and more severe reactions, more ER visits, less access to resources. And I think you know, it's obvious that we have a strong history of racism in this country, but you know, you as a person of color, why do you think this disparity exists and how has it impacted you personally or those that around you in your community? It's a load of question.

SPEAKER_00 38:21

So no, no, no, no, it's it's important. It's a great question. Growing up, like, you know, not to age myself, growing up in the you know, in the late 70s, 80s, you know, I'm 50 years old, let's air it out.

SPEAKER_01 38:34

Well, I thought you were maybe like early 40s, no way.

SPEAKER_00 38:39

So 50 growing up, 51. But growing up in that space, you know, we're talking about health equity and the barriers that we face, you know, knowing, you know, growing up in a very uh impoverished neighborhood, you know, especially dealing with I was a chronic asthmatic and not getting the right access to care. It was constantly more emergency room visits than asthma management. So it's like here's the medication, and all right, good luck. That's what's the narrative back then. You know, when you talk about disparities, I believe this it exists because of the layers of inequity, and it's not just one thing, it's the access to specialists, it's the access to accurate diagnosis and economic barriers pays a big part of that. Like it's difference in education and awareness, like it's systemic issues in healthcare, it's environments where people may not be giving the culturally competent care where their concerns are like taken seriously enough. You know, there are lots of layers of information that can go into this, and I think this will have to be a whole new other podcast, but when those gaps exist, the outcome gets worse. When there that access to care within these communities, you know, you see more severe reactions, more emergency room visits, and less consistent access to management tools. Like I remember growing up when they started doing this these home visits, like these community health workers coming to the house and helping my mom understand, you know, management of asthma. But then that went away so quickly. And and that's the problem. And they take away these resources to bring to these specific communities, you know, to help them manage it. But then when it's taken away, you don't have that access to it anymore. You know, so it's like again, you know, you s you see the more reactions in emergency visits, and you know, this is why this work is cannot just be uh general awareness, you know. It has to be something that's equitable and access that the awareness is there and the care is there.

SPEAKER_01 40:49

Yeah, absolutely, and I think that there's especially in marginalized communities, there is a lot of disparities. And so I thank you for sharing that insight.

SPEAKER_00 40:58

Um just again, it's like when you're when you're a graduate organization, you know, we do our best, you know, to go into these communities and and create the awareness and give them the access to resource. But it doesn't, you could, you know, we're just like, you know, grain of sand, you know, like with so many people that can do that. You know, our model is someone that told us like, don't just talk about it, be about it. When you want to give back to the community, it's great to highlight the statistical data, it's great to highlight this, but it's it's more about not just putting money into the community. It's like, are you really going into the community doing the work? Show us why this matters. Show us that you're training, changing the inequities that are in these communities and removing those barriers and giving them the right access to care and information that can actually keep them safe. We knew like these underserved communities, the black and brown communities, are though they have high prevalence that, you know, with these comorbidities, you know, and also food allergies and asthmas on that based on the socioeconomic construct that is in the environment, you know, poor neighborhoods, it raises, you know, you know, poor health conditions. So how do we combat that? And it takes not just my organization, but multiple organizations to go in like boots on the ground to do the work.

SPEAKER_01 42:17

And I think too, just eventually having to have just a system be changed. I think it's just a systemic issue too. I think that's the root causes. I think you know the work that you guys are doing is is hopefully gonna help create that change, but obviously there's a need for that. So, you know, you know, what would it look like for foodology like foodology advocacy space to truly center equity? Like what's really missing?

SPEAKER_00 42:40

We kind of discussed a little bit, but there's some like I said, it will it will look like like representation, you know, like access and accountability we talk about all the time. You know, it would it would mean that the black and brown families are in these underserved communities and those facing economical barriers are not treated like an afterthought. And and that's that's the narrative. Even I just read something, it's like, you know, have COVID, you know, impacted these communities? Are they getting the the necessary needs, you know, based on you know funding and so forth? They're not. It's like, you know, there was a lot of mention during COVID by helping these communities and giving them the right resources, but like how many people have pulled back from that narrative and now no longer providing that, you know? So it's like when they're facing these economic economical barriers and not treated like, you know, and treated and treated like an afterthought, you know, that there are voices that would be central and not peripheral if you know these things were changed. And like what's missing right now is often the full acknowledgement that, you know, when we look at food allergy advocacy, it's also a health equity issue as well. It's a public health issue. And we need more community based education to build on that, like more culturally responsive outreach, more diverse re representation in. Leadership and and storytelling. It's not just storytelling again to make yourself look good as an organization. You it's it's like telling the story unscripted in a sense. And more honest conversation about who gets left out and you know and looking out at the traditional advocacy spaces, you know, centering equity for us means like not just asking how to spread the awareness, but asking who is actually who is it actually reaching and not who is and not who's and not who is not reaching. You know, we want to make sure that it's equity for all and we everybody has to stand on that same soapbox.

SPEAKER_01 44:42

Absolutely. And do you think that you know in your personal experience, like how have you seen that in the allergy like advocacy space? Do you feel like we're like really like lacking in that because you're in a nonprofit environment? You feel like it's gotten better over the years, considering you know how your nonprofit is kind of addressing those those concerns and gaps.

SPEAKER_00 45:02

I think within you know, we're all you know, we're all in the same space and we're all looking to mitigate risk before, you know, until there's a cure. I think we're all doing our part, right? We're all doing our part, but funding becomes one of the bigger gaps. You know, there's a lot of things that we do without funding. We go into these communities and do the best we can and give them the resources and access to that. A lot of organizations are doing the same thing, but we need to kind of like create almost like uh a bigger foundation of leadership to address these inequities in these communities so where we can actually again, you know, help the community. Yeah, and it's like statistical, again, statistical data reads the how many, you know, people were affected by food allergies, how many kids are affected by food allergies, but there's a lot of a lot of people that are on that are not listed in those statistical data. So we're we're we're looking at higher prevalence of food allergies that's not being listed, especially in these communities that are exposed to asthma and food allergies and other core morbidities. So it's like the two we can address these and see it and work on the same page. And I think again, every nonprofit in the food allergy space has been addressing that. But it's a lot that has to be on the ground, boosted the ground, doing the work.

SPEAKER_01 46:18

Yeah, yeah, that that makes complete sense. That makes complete sense. Thank you for sharing that insight. That's really like I think really helpful to know. I guess I I I guess I could ask you this question, you know, to talk more about the emotional reality of running a nonprofit. Like, what do you wish more people understood about the personal cost of advocacy, especially in your situation?

SPEAKER_00 46:38

Like, you know, we start a nonprofit, you know, just because you start a nonprofit for a cause. You know, it looks like long days, you know, it's like late nights. Emotional labor that falls into all of this and a lot of balancing. So years, you know, it takes you years to build something from a place or a mission of gr of pain, you know. Some people it's not on a pain, it's about a purpose. You know, like there isn't really an off-switch to this, and you're carrying the work and the reason why the work has to be done at the same time. Like I said, the sacrifice is real, the time and energy and rest is, you know, the bandwidth that goes into it. So these are things that people don't always see behind the advocacy work, you know, especially when a nonprofit work is rooted in the memory of a child. You know, there's so many or organizations out there that have lost their child through food allergies and start their own nonprofit because their mission is to we don't want another family going through what we went through. And I understand that and we feel that wholeheartedly. And you know, it's hard to say like I that word commendum is like it's such a bad word to use. But we all wouldn't be in this position, you know, if we didn't see there is a space that is needed, you know, and as much as we can put out there, we have to do it, you know.

SPEAKER_02 48:04

Yeah.

SPEAKER_00 48:04

And again, a lot happens after the hours of why we do this, you know, at the same time, it's purposeful, it's purposeful work and it's sacred work. So while the sacrifice is real, so is the meaning. There's so much that goes on, and like our organization, we don't have the financial deaths of these big organizations, the financial funding that they have, you know, so it's just like five of us that runs this organization, and we do it the best we can to make it we're small but mighty at the same time. Yeah.

SPEAKER_01 48:35

Oh yeah, you're making such a big impact. Like I think that's a great way to describe it. And I think, you know, especially the the the non-profit you, you know, you run in and and the reason why you're doing it is definitely like emotionally taxing. And I know we can probably there's days that are really hard, and I want you know that like we like us. I don't want to speak for on behalf of everyone in the allergy community, but just myself, like I'm just so grateful for what you do and just the lives that you're changing and the impact you're making so people can feel safe and include it in a in a world talk built for people like us. So like I know that like there are days that are hard, but you're making a really big difference, and and so I just again like I could not thank you enough for what you're doing.

unknown 49:17

Yeah.

SPEAKER_01 49:18

And you know, there's definitely probably had moments where you've wanted to step back because it probably felt because you're also, you know, you're also a stupid, you're also a doctoral student, which we kind of discussed before we recorded, but how do you balance not being a doctoral student and then running this nonprofit? Like, how how do you balance all of that?

SPEAKER_00 49:35

And you know, luckily, like everything is, you know, it's you know, I learned from an early point. It's it's called time management. It's like how much time I give to the spaces that are needed, you know, when it comes to the nonprofit, it always is always presidents over everything else, right? I make sure I manage out my calls, my meetings, you know, if I have to travel, and then there's you know, you know, but also at the same time managing, you know, family life and then managing my own personal space, but also giving the time to my education to finish up my degree. And I usually give that towards the evening time, like after hours, I call it, and you know, focus on that. So it's it I've learned time management and learning how to move that process forward without kind of like going crazy at the same time.

SPEAKER_01 50:28

It's a very important skill to have is to manage your time. If you can manage your time, then I feel like you're golden. That's how I've kind of figured out all my stuff. So unless for this, these are more questions that are geared towards the food allergy community, you know. What is the single most important thing that caregivers, teachers, and daycare workers that should know about food allergies that they often don't that are listening to this?

SPEAKER_00 50:54

I think, you know, we talk about like, you know, trying to remove the fear of understanding food allergies. Do you know that food allergies can turn to a life threaten and very quickly and hesitation can be dangerous. But to many people who still think that food allergies is just a preference or a mild intolerance or something like that, that people would have to do it. I wish it was.

SPEAKER_01 51:17

That would make life a lot easier.

SPEAKER_00 51:18

No, it it would make life a lot easier, but that's only because become serious if a child looks dramatically sick right away, and that misunderstanding can cost precious time. So, like for caregivers, teachers, daycare workers to understand that anaphylaxis can escalate very fast and that epinephrine is the first line of defense to save lives. So preparation matters, training matters, taking every allergy situation very seriously. And it's the again, it's like with organizations like ourselves, it's going into these spaces and removing the fear and educating them on the understanding of anaphylaxis prevention and mitigating risk and how for them to understand the signs and symptoms of these childs and you know also understanding their narrative when they speak their words when they don't feel certain ways, especially in the most vulnerable populations and childcare centers. You're talking about children from zero to four or even five who may not understand what they're feeling. So always take what they're saying seriously. Because if a child says my throat feels funny or my tongue itches or it feels spicy, those are key words that you can look for. So possibly they may have ingested something that could have created a reaction. So those are just some of the things for them to kind of like, you know, understand because it's there's a lot for them to understand. And I understand, like, you know, these childcare centers, they feel like they're they're being burdened with all this information and they don't have the tools, but they're organizations like ours that go in and give them the tool to remove the fear so they can act accordingly to save a life. Because we when you look at it, even in the most rural areas, like first responders cannot come there right on immediately to administer epinephrine. So we have to look at the childcare educators and caregivers to be basically that first line for like those almost like first responders to give the access to care. And I always say, you know, child care equals health care at the same time, because you have parents that's dropping off their kids at schools with food allergies, with asthma, with diabetes, epilepsy, so many things. And it's like these childcare centers, they feel like they're burdened, but also we're trying to make sure that they keep our children safe the same way we would as a parent.

SPEAKER_01 53:36

That's I mean that's a hundred percent true. I think it's a really great answer. And I think that like you bring up a really important point about how like if if if there's a child that is expressing that they are feeling uncomfortable to listen to them because like they don't know what's happening, and and as I said, anaphylact can escalate very quickly. It's it is it is life-threatening. So I think that when in doubt epinephrine is is the first sign of defense.

SPEAKER_00 53:58

So yeah, it's too just to kind of like interject a little bit, it's also because yeah, children have their first reaction in a childcare center, unbeknownst to the educator, unbeknownst to the parent that the child has food allergies. That's why we strongly, you know, put these bills forward to have undesignated stock epinephrine to have for these classrooms for these childcare centers. So in the event of emergency, an educator can administer at least life-saving medication to save this child's life. You know, we're talking about children trying their first like a food that they never had that they could possibly be allergic to. So this is why this type of laws like this need to exist to prevent a tragedy or prevent something that can, you know, cause harm to this child.

SPEAKER_01 54:41

Absolutely. Absolutely. Well, that's absolutely important. So, you know, what do you want people to remember about Elijah himself? Not just like the law of the foundation, but who he is.

SPEAKER_00 54:57

Oh well. What I want people to know about Elijah is his joy, his smile, his innocence, his light. I want people to remember that he was such a beautiful little boy who was deeply loved, not just by his family, by the people that he met. You know, he was not just like the name behind the law, the name behind the foundation. He was a child, you know, he was our son. He like he was a life full of meaning. And we talk about it like Elijah, every time he felt sad or he felt nervous, he will always say these words, make a hand, make a hug, make a kiss, because that was his way of communicating like he needed he needed that. You know, so he was such this very heartfelt Oh man, heartfelt young man, little boy, my son. But he just embodies so much, you know, and again, like I want people to see him. It's not just it's not about the law, it's not about the name of the foundation, it's about him and what he brings and what we can all do together.

SPEAKER_01 56:06

He sounds like a really special kid. He sounds like a really special, yeah. Thank you for sharing that.

unknown 56:13

Yeah.

SPEAKER_01 56:14

And it's not to transition, get off topic super quickly. No, no, no, sir. But you know, this is a question I think that is obviously so important, you know, from ICU Pussy or their son Sebastian and everything. And I asked this question to all my guests, because this podcast ultimately centered around, you know, the mental health side of living with allergies, and we kind of touched on that with your more in your you know, grief and advocacy journey, which is super relevant. And so if you could design the ideal emotional and medical support system for food allergy families and patients, what would that look like to you?

SPEAKER_00 56:46

Uh wow. It will be about comprehensive. Comprehensive. It would include it would include the quality allergy care, affordable medication, clear instructions, schools and child care preparedness, like mental health support is so key when it comes to that. Culturally competent services, a strong community can actually like families should not have a peace. Families should not have a peace together survival on their own in a sense. You know what I mean? And yeah, I believe the ideal system like would support the whole family, not just the diagnosis, because food allergies affect daily living and emotional health. So more importantly, like also the financial uh stability, also providing school experiences, the social life, and also the peace of mind. Because family deserves a system that can see all of that and provide that to them.

SPEAKER_01 57:47

That is a great answer, and I hope that we can one day live in a world where that is achieved and that happens. I think that's that's I always I think every time I ask this question, I always get kind of a different answer, and this is a really great perspective and outlook. So, you know, Thomas, thank you so much for your time and for sharing, you know, about Elijah and the work you're doing and how much yeah such change you're creating in our in our country. I mean, all different states obviously, and for the work you're doing to make people like me and people, young young children, especially people in daycares, feel safe and have the proper protocols and things needed in case they're in a situation where they are going to an allergic reaction. So just thank you for all the all you do for the food allergy community. For those that want to, you know, follow you and support the work that you do, where can they find you and the nonprofits social media pages as well as the website so they can link it all?

SPEAKER_00 58:46

Yeah, I think people can find us and support the Elijah LV Foundation through our social media at Elijah's Echo on Instagram, on TikTok, on X platform, or find us at the Elijah Elijah Libre Foundation on Facebook. And you know, connect with us, you know, if you want to volunteer, support, donate, help with the advocacy and our community efforts. So, you know, for support, looks like you know, sharing our message, you know, just getting the message out to create awareness and attending like events that we have coming up or you know, and partnering with us. You know, it's just helping us amplify the mission that we're doing, because the work we are doing is to protect children and families and individuals. You know, because you know, we we do this is not just for us, but we do it for the community that we serve, because you know, that is that's where it's all rooted from.

SPEAKER_01 59:43

And amazing. Well, thank you so much again, Thomas. And to those that are listening, thank you for taking time to listen to today's episode. I hope you all have a great day, night, wherever you're from, and I'll see you next time. Goodbye.