Ep. 252: The Early Childhood Anaphylaxis Collaborative

Children in early childhood education programs are among the youngest and most vulnerable when it comes to food allergies. To address this critical gap, a dedicated group of professionals created the Early Childhood Anaphylaxis Collaborative. Today, we’re joined by Thomas Silvera—founder of the Elijah-Alavi Foundation and a founding partner of the Collaborative, as is FAACT's CEO, Eleanor Garrow-Holding—to explore how this initiative is making a difference in food allergy communities nationwide.

Resources to keep you in the know:

• Early Childhood Anaphylaxis Collaborative
• Join the Collaborative - As an early childhood care provider, health care provider or parent.

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Transcript

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

each episode will explore a specific topic, leaving you with the FAACTS to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board-certified allergist or healthcare providers for advice specific to your situation.

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

And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, we would like to take a moment to thank Kaleo for their kind sponsorship of FAACTS Roundtable podcast. We also would like to thank them for the support we've received over the years.

Children in early childhood education programs are among the youngest and most vulnerable when it comes to food allergies.

To address this critical gap, a dedicated group of professionals created the Early Childhood Anaphylaxis Collaborative.

Today we're joined by Thomas Silvera, founder of the Elijah-Alavi foundation and a founding partner of the Collaborative to explore how this initiative is making a difference in the food allergy community nationwide.

FAACT is also honored to be a founding member of the Early Childhood Anaphylaxis Collaborative, as well as our CEO, Eleanor Garrow-Holding, serving as an advisor

Welcome back Thomas, to FAACTS Roundtable Podcast.

I am absolutely delighted, thrilled. I don't know what other words I can use to have you back on the podcast because you are one of my most inspiring people in this food allergy community.

You inspire me, you inspire fact, you inspire everybody. So we are just delighted to have you here to talk today.

Thomas: Oh wow. I appreciate that. That intro,

it is rooted in my heart and my soul to make sure I can be that sounding voice for so many if they willing to listen. I'm grateful to be here and honored to be having this conversation with you.

Caroline: We appreciate your time and again are so thankful as you can tell that you're here.

Before we dive into the Early Childhood Anaphylaxis Collaborative, can you help our listeners get to know you a little better by telling us just a little bit more about your organization's journey, your journey,

and then why this collaborative is so meaningful to you?

Thomas: Absolutely.

I always get choked up when I talk about this because no matter how many years go by, it's always going to be one of those things that is hard to Talk, but it's my therapy.

Let's just dive in.

So,

you know, the Elijah -Alavi foundation was created out of both heartbreak and hope.

So in 2017, my son Elijah tragically passed away after being fed a food allergy while he was attending his childcare center. He was severely alert to dairy. And from that moment, it changed the trajectory of my family's life, of Dina's life, my son's life, and family and friends all around.

So we made a commitment that Elijah's story would not end with tragedy. It would inspire change.

And since then,

the Foundation has worked tirelessly to ensure that food allergy safety is prioritized everywhere where a child is spending their time.

So we advocated for legislations like Elijah's Law, first in New York, which is now in multiple states.

And it's requiring childcare programs and schools to have allergy protocol, staff training, and emergency preparedness in place.

And the Early Child Anaphylaxis Collaborative is meaningful because it takes this mission to the next level. And it's not just about one law or one program.

It's about building a united front of experts, parents, educators, and policymakers who are who are committed to protecting our youngest and most vulnerable. So this collaborative gives us a platform to share resources, align strategies, and amplify our voices so we can create a sustainable change nationwide.

Caroline: And Thomas, I have to tell you, your story impacted the community just profoundly. I don't even know how to explain it, but just so profoundly. And thank you so much for your courage and Dena for creating the foundation and doing your work, because you raise awareness in ways that none of us can and so just want to share that appreciation and how excited we are about this collaborative.

And so now this collaborative brings together leaders with this powerful vision that you just teased us right into.

So can you share more and go into depth about the collaborative and the mission and again, what's driving their work and where they're headed.

Thomas: Being asked to be a part of this collaborative as one of the founding members. You know, this collaborative is made up of incredible group of leaders from the Elijah-Alavi Foundation, FAACT, AAFA, Kids with Food Allergies, Code Anna, Early Learning Leaders, and CFAAR.

So even with advocates who are on the front line and policies and physicians and researchers who bring the science and organization that has long worked with families navigating food allergies.

So together we are creating a space where expertise or lived experience that come together for one mission, and that's ensuring childcare settings are safe and prepared and inclusive. So what makes this collaborative truly unique is how it unites voices from across sectors.

And really do we see that in many organizations coming together. And so I believe that the Early Childhood Collaborative is powerful and our mission is simple, but it's very urgent.

It's rooted in prevention and preparedness. And we know anaphylaxis can happen within seconds. And that's why our focus is making sure that every childcare center and preschool have trained staff, emergency plan access to epinephrine.

And just as importantly, we want to raise the awareness to reduce the disparities and families in underserved communities often face with a greater barrier where limited healthcare access, culture, stigma and lack of resources are there.

And the vision of this Collaborative is to close the gap that safety and education aren't privilege,

they're a right for a child.

Caroline: And so now the collaborative itself, is it accessible to everybody nationwide? Is it regional?

Thomas: So the Collaborative, it's nationwide. And there's so many ways to be a part of this, no matter who you are.

Caroline: So on that note,

for people listening to this podcast right now, how can they get involved with the collaborative? So I know there's a website and they're developing materials and getting that education out there, but how can someone who's listening get involved?

Like, if there's a preschool in their neighborhood or a public pre-K program, what could they do?

Thomas: I think one thing for listeners to understand this Collaborative and what they can do is to be a part of this work no matter where you are. As parents can actually start by asking their childcare centers or school tough but necessary questions.

And do staff know how to recognize and respond to anaphylaxis? Is there epinephrine on site? What are the emergency protocols educators can access to the collaborative site? Once we want to make sure we share this site across so many platforms so educators, providers can connect with us for training resources and share their perspectives on what's needed in the classroom.

Healthcare professionals can actually support by lending their expertise in educational campaigns or even volunteer their time to train childcare staff. And I know within legislators and policymakers, they can actually help push for stronger laws and funding to prioritize allergy safety in early childhood programs.

And I think for everyone else, it's like raising awareness is powerful. Share resource on social media, talk with family and friends about food allergies, or donate to support, you know, the Early Childhood Anaphylaxis Collaborative.

The listeners can also visit the site to sign up for updates, join the campaign, and also call on decision makers to take action. So when I said this prior, it's like my community comes together.

Whether you're a parent, nurse, teacher, or an advocate, you become part of the solution.

Caroline: That is so critical.

You know, again, listeners, right before we jumped on, Thomas and I were talking about that we are a community and we all have these different roles. And you're right.

Our goal is just to become part of the solution.

Thomas: Correct.

Caroline: All right. So now, since you are really quite the expert in this area with your foundation and your work and your passions,

what would be your hopes and dreams as a participant of the Early Childhood Anaphylaxis Collaborative? And then again, as Thomas, who's changing the world,

what do you see or hope for?

Thomas: Good question.

So my ultimate dream is that food allergy safety becomes as automatic and ingrained as other basic safety measures.

You know, just like we don't think twice about a fire drill, CPR training.

And that's imperative to understand because I want epinephrine training and allergy preparedness to be the standard in every childcare and educational setting.

And on a broader scale that I hope this collaborative sparks national policy to ensure Elijah's Law or similar protections are adopted across states. Like, I don't think no family should be left behind because of where they live.

And I also dream that our work can address the racial, social, and economical disparities that are being faced right now. And too many children of color and children in underserved community are facing additional barriers in access to care, treatment, or even taking seriously when they talk about their symptoms.

So if the Early Childhood Anaphylactic Collaborative can not only protect children in every classroom, but also influence how society views and support families managing food allergies, then we'll have created something truly transformative.

And I think this is just the tip of what I want, part of the dream.

And I say this because it's like we have to keep pushing that momentum forward. We talk about strong community.

I didn't choose this path. It chose me.

So the dream that I ultimately want is something like this. Not for just this Collaborative founding members to come together, but every organization and business to stand on that one soapbox and share that shared mission to create change until there's a cure.

Caroline: That is so inspiring. That's the word I always use when I see you. That's all I can think about. It's amazing. And for listeners, Thomas is sitting here, and behind him on the wall are all these plaques about Elijah's Law and being passed in different states.

So, Thomas, do you mind if we just Stop for a moment here. And can you explain Elijah's Law? I mean, there's a lot of plaques behind him,

a lot.

Thomas: Elijah's Law is again, it's something that's near and dear to my family's heart and the work that we put into it.

I just thought we passed this in six states right now,

hopefully moving into the seventh. And Elijah's Law in threefolds, it's access to epinephrine,

getting trained the educators, and also providing the resources and finite in terms of how we move things and keeping children safe in childcare centers.

It sounds as simple by me talking about it, but it's so more in depth of what goes into creating the policies.

So we have to navigate the legislative process in order to make sure that we are providing the right access care for these centers in these different states. Every state is run differently.

So we have to work within those. Those regulatory systems in order to create that change for Elijah's Law.

Caroline: I had some personal experience with that as well, is here in Nevada when I started a support group. I started it as a nonprofit because my advisors had said, if you want the medical community to pay attention to you, make it a nonprofit.

So we made it a nonprofit. And we did start doing allergy trainings and awareness meetings in different preschools. But then our state said, you have to stop that.

Because we only want nurses and medical professionals doing it. Because we'd reached out to the state said, this is what we're going to do. Here are the materials. And we gave them everything.

And we did it for several months. And then they came back and said, no, we're going to change it. Where if anyone's going to do any kind of training in these early childhood centers, it had to be with a medical professional.

So I can totally see how each state is very, very different.

Thomas: It is different. I think, like I said,

when we talk about that, it's a lot of people think it's easy. It's not because you can get a lot of pushback when it comes to the legislative process,

but it's working. Finding the right legislator that can actually get you in the doors and work within the committees and letting them hear your story, a personal story, is more impactful than just, you know, telling them this is what you want to do.

So there has to be a connection built. And to my understanding, I know that medical professionals,

they expect to be the ones to administer the access of emergency medication, but when there's a life involved that that is really going through a tragic event like we need to make sure that anyone that's.

That's in that environment can actually give that access to care to save that life.

Caroline: So.

Thomas: And that's one of the things that it baffles me is going through that legislative process because someone was like, no, only medical professionals should be administered that.

So we want a doctor or nurse to run to a school that probably does not have a medical personnel on staff. Anaphylaxis happens within seconds and minutes.

So how fast can you get to the school that saved that child's life, to save that person's life?

So that we have to change that narrative and give access to the educators and staff that can actually go and get the epinephrine to administer it immediately.

Caroline: Those are just excellent points.

I mean, that's what we're seeing, and that's what we're trying to change now.

So before we say goodbye today, is there anything else you want our listeners to hear from? You went very fast.

Thomas: I know.

And I know one thing I didn't touch on that's, like,

for me,

part of why we started the organization is because we needed to create change.

You know, with Elijah's mother, Dina,

you know, even in her grief, she wanted to do something. Instead of channeling that anger to being more aggressive and angry,

we decided to create change by doing this.

And it changed the trajectory of my life. It changed the trajectory of her life again, like I said in the beginning,

it affected everyone around us. Like, I am put in a position because,

you know, my son's passing.

I'm in the process of creating change within the path of my life by going through the educational channels and receiving my doctorate, because I need to continue pushing forward to create change.

And. And I'm walking the path that was stolen from my son, Elijah,

because had he been here, we wouldn't be having this conversation.

You know, his life would have been different. But my son did not die in vain.

So that's why we here. We're coming together and creating that impact.

And to. What I want to leave for listeners is that food allergy safety is not just a parent issue.

It's a community issue.

And I say that because I believe that every teacher, nurse, policymaker, neighbor has a role to play in protecting the most vulnerable children.

And when we step up together, we create a safer space where kids can learn,

grow, and thrive without fear.

And for families who are navigating food allergies,

you are not alone. And I know the fear, the anxiety, the frustration.

But I also know the strength that comes when community rallies around you.

And that's why the Early Childhood Anaphylactic Collaboration is all about so building that community and sharing resources and making sure that your voice shapes the future of what we're doing.

And it's not just because of the Collaborative. It's because of the voices and the advocates and everybody coming together.

And I finally want people to know is to remember my son Elijah. His life continues to inspire this work and through this Collaborative, his legacy is saving lives every day.

And not just because of him, it's because of you,

the community.

Caroline: Extremely beautiful and powerful words. Thank you, Thomas, again for your time and listeners. I want you to know I will have all the website information about the Early Childhood Anaphylaxis Collaborative in the show notes so you can visit the website, you can see how to get involved and how you can take this wonderful inspirational conversation with you into your day and weeks and days,

years ahead. So thank you again, Thomas, for everything that you do and for helping us get to know the Early Childhood Anaphylaxis Collaborative better.

Thomas: No, absolutely no. Thank you for having me. And if you need me on the Talk again, I'm more than happy. Love you guys. You guys are doing phenomenal work and I'm just happy to be a part of that mission with you all.

Caroline: Before we say goodbye today, we just want to thank Kaleo one more time for their kind sponsorship.

Thomas: Foreign.

Caroline: Thank you for listening to FAACt's Roundtable podcast.

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