Ep. 248: Behind the Movement: Red Sneakers for Oakley

After the heartbreaking loss of their son Oakley, his family turned their grief into action—founding Red Sneakers for Oakley, a nonprofit that has since grown into a powerful movement dedicated to saving lives through food allergy education and awareness. Today, we’re joined by Executive Director, Lindsey Spangler, to learn more about this inspiring organization, the programs making a difference, and how you can be part of the movement to protect and empower families everywhere.

Resources to keep you in the know:

• Red Sneakers for Oakley

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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.

After the heartbreaking loss of their son, Oakley, his family turned their grief into action,

founding Red Sneakers for Oakley, a nonprofit that has since grown into a powerful movement dedicated to saving lives through food allergy education and awareness. Today we're joined by Executive Director Lindsey Spangler to learn more about this inspiring organization.

The program's making a difference and how you can be part of a movement to protect and empower families everywhere.

Lindsey, welcome to FAACT's Roundtable podcast. We're absolutely excited and thrilled and delighted, and I don't have enough words to explain how happy I am about you being on the podcast today and helping listeners get to know Red Sneakers for Oakley.

So much better.

Lindsey: Thank you so much for having me. I'm so glad that this worked out and that we can continue spreading awareness.

Caroline: Exactly. It's perfect. So thank you. Let's begin with Oakley's story. How did such a heartbreaking loss inspire a mission that's now protecting so many?

Lindsey: You know, Oakley's parents co founded Red Sneakers for Oakley to honor his life and prevent other families from experiencing the same devastating loss.

Right. Red Sneakers. He loved them. Those were his favorite. So they became really a symbol of food allergy awareness and really today represents this growing movement to educate,

advocate, and save lives.

Caroline: Well, your impact is so huge. I've seen international postings even. I mean, you are just really doing an amazing job. So let's just dive right into Red Sneakers for Oakley and exactly what you do and what our listeners can learn all about your organization.

Lindsey: Yeah. So I am the executive director for Red Sneakers for Oakley Now. And, you know, our biggest mission, obviously is spreading awareness on food allergies, how to save lives. But really,

if we teach you how to save the life, what is the medicine that you need to save the life? Right. Epinephrine is the only medicine to help reverse anaphylaxis. So really, Red Sneakers for Oakley, our bigger mission is now is to get EPI everywhere.

Right. Making sure that people have the life saving medication to save a life. And really, you know, yes, we have a global reach. We have such amazing followers. And just making sure that this does not happen again, which it can happen so quickly.

Caroline: So true. That is absolutely so true. I mean, and you're right, I mean, I remember when my two children with food allergies, they're now young adults, were diagnosed with food allergies.

It was so important to get that message that you must always carry epinephrine, always be trained and ready to use it. It's just so critical.

Lindsey: Yeah. You know, a lot of people don't know that I'm a food allergy mom, but I'm also a family nurse practitioner and work in urgent care. I joined this mission to make sure that no child, no family,

no community is left unprepared.

So making sure that these people know you always carry epinephrine. And how many do we carry at one time? We carry two at all times. Because if you administer one and symptoms are not improving or worsening.

Right. We administer the other one. Or a lot of families say, well, my child has only had a mild reaction. We don't need to carry epinephrine. That is, you know, a mistake.

And this can really save a life.

No matter what your reaction was prior to,

even if it was mild, that next reaction could be fatal. You know, in the case of Oakley's story, they didn't have epinephrine. And looking back now, if they were properly educated and carried it, you know, he could still be here.

So making sure that these, the community is aware of the severity of it. And epinephrine is what we need to keep carrying at all times.

Caroline: Absolutely. And actually, a little secret,

my family, we carry extra.

So. So even though I don't have allergies and my two children,

I don't know if I should be calling them children, my adult children, they're in their 20s.

Lindsey: They're always your child. They're always your child.

Caroline: Thank you. I always tell my son that I'm like, you'll always be my baby boy. But I don't have allergies. My husband has a bee sting allergy, so he carries. But I just naturally carry in my purse too.

They get extras and then I carry it so in case they lose theirs or leave a purse somewhere or leave a bag somewhere. And so I confess that we carry extra.

Lindsey: I know, but how amazing is that? Right? Because if someone's having a true anaphylactic Reaction, you actually could save their life. You're carrying it. Right. A lot of times people can't help people if there's, you know, a life threatening emergency.

But you carrying that medicine can save somebody else's life, which is really amazing. And that's our goal.

Caroline: Excellent point. So now I know your organization has an ambassador program. Can you talk to us about that too? And who are your ambassadors? And is this something other people can engage with or they can support the ambassadors?

Lindsey: Yeah. So the ambassador program really is one of our most powerful ways to kind of extend our mission into communities across the country,

globally. We have ambassadors everywhere. So this is a way that anybody who feels like the need or the want to empower other people. Right. They reach out to us to red sneakers.

Really, this is the chance for them to get into the community,

really have a real impact on food allergy awareness. They wear their red sneakers, they pick a day that they want to spread awareness or they're doing it all the time.

So it's the way for red sneakers to get in the community, get it global, spread awareness and really empower individuals to do this. That's if it's their passion.

Caroline: And Lindsey, can we just talk for a minute on the red sneaker itself? So is it a particular kind of sneaker? Could a red shoe work?

Can any kind of red thing on their, their feet? But let's just talk about the sneaker because it's pretty cool.

Lindsey: It can be anything, right? So now that you know red sneakers for Oakley, anytime you see someone with a red shoe, like looking at them, I'm like, do you know about food allergies?

Do you know about red sneakers for Oakley? And usually, you know, that's your talking point, that's your elevator pitch. Right? So it could be any red shoe. It doesn't have to be a specific sneaker.

It could be a shoe, it could be a sneaker, it could be a red heel, dress it up. Red is, you know, our power symbol. A red shoe, red sneaker.

So yes, whatever you have. But if you become an ambassador, you get a special ambassador kit, you get, you know, a red Converse sneaker,

you get special tools, educational material.

You know, we work with you to decide, like what is your passion? What do you want to do in the community?

Do you want to do something at the school level? Do you want to do something in your office?

Put together an event.

We will be exploring and expanding our ambassador level. So please stay tuned for that. It's exciting.

We have a lot of growth when it comes to our ambassadors and soon we'll be able to share it more with everybody.

Caroline: Well, that's exciting.

I'll make sure I have links in the show notes so people can track you and follow and, and see when this kind of new fun things come about. And so now you mentioned schools and workplace.

Any colleges participated yet? Or maybe that's something we're hoping for. I'm just selfishly asking. I have college age students.

Lindsey: So when it comes to ambassadors, any age, any level, any school level, college, we want everybody, anybody that wants to become a Red Sneaker ambassador, please reach out. We do not exclude anybody, any level of involvement.

Right. We have ambassadors that are elementary school to high school to college levels. Anyone in the community, at your workplace,

any age can be an ambassador. Again, this is just a chance to spread awareness on food allergies in the community.

And again we help you with whatever event you would like to put together.

Caroline: That's fantastic. So now your website has a lot of resources on it. So if someone goes to your website, what are they going to find?

Lindsey: So one, there's a lot of resources on education, right? Downloadable flyers, posters, toolkits,

signs of anaphylaxis, how to use epi, there's videos on how to use an AVI Q epinephrine injector, a generic epinephrine injector.

Anything you want to know on there you can find, always reach out to us, right? If you have any questions on how can you get involved, our upcoming events could be on there as well as our period chapter.

We do have a first chapter in the Midwest for Red Sneakers for Oakley and they really made the first allergy friendly city. And again we are expanding. So again we can't talk about it too much yet cause it's not ready to be talked about yet until we have all the details done.

But anything you want to find you can find on the website and if you can't find it, just reach out to us.

Caroline: So now how long has the organization been running and can you maybe talk about one event or something that just is in your heart that just one of your most favorite things?

Because to me Red Sneakers for Oakley has these amazing events that are just life changing.

Lindsey: So this past May for Food Allergy awareness month, we hosted the first allergy friendly soccer clinic in West Palm Beach, Florida. And this was with world renowned athletes Mia Hamm, Tish Venturini, Christine Lilly.

These athletes were there with our allergy community as well as non allergy kids to put together this amazing soccer clinic.

It was top Nine allergy free.

They had snacks that were the allergy free for the campers afterwards. And they just got this all included experience.

Right. A lot of allergy families don't go to soccer camps or different events like that because the risk is too high.

So having this camp where they were safe. We had families that flew from Jersey down to West Palm beach from, you know, all over.

So this was our first camp we did. We would love to continue and do it in other locations, but it was really amazing.

The amount of support that we had after that event,

you know, reached our heart and it was very special.

Caroline: What an incredible event.

I don't know how I missed this, but just one, having all these celebrities, but two, it is so hard to find camps. I remember years ago struggling for my son and the only reason he ended up in a basketball camp is I met the camp director and had confessed that my son was going to go to sewing camp over winter break.

And he was just like, sewing camp, but I have this basketball camp. And then I said, but I'm not comfortable with the food allergies. And then he said, well, if you teach me about it, then we'll make it happen.

But that was a rarity.

So this is so incredible that people had that opportunity. I could see why they'd fly from down from New Jersey or drive down. I would too. That's incredible. Incredible.

Lindsey: I mean, it was, you know, a three hour clinic, so it wasn't like an overnight camp. Right. But this was just a safe space with the best of the best soccer players.

Right.

And you know,

the athletes spreading awareness on food allergies. We taught them some things, right. They, they didn't realize the extent of food allergies. And so it was just a great event, a great food allergy awareness day with, you know, hopefully a lot more to come.

Caroline: This is just so amazing.

And I just want to add, my son did get to enjoy both camps. He went to sewing camp. He sewed me a really cool purse that I still.

He went to basketball camp and that was the first of very many.

So now looking forward, what is your hope for the future? For red sneakers? For Oakley?

Lindsey: I think all of our hope is that we continue to grow right into this more of a global movement that not only raises awareness, but transforms how we, you know, respond to food allergies.

And our main goal is getting EPI everywhere. And like I discussed,

the first allergy friendly city here in, you know, Peoria, Illinois. We have three restaurants that are now equipped with epinephrine. We have A large venue that has epinephrine. The first professional minor league baseball team.

We're donating to a hundred police officers. Epinephrine next week in September.

And a college stadium, like a college university.

These places, we go there. I provide all the food allergy education, I train them,

you know, we donate the medication to make sure that they're properly equipped. Then we're going to do this more on a national scale.

We're really excited to, you know, share our vision, our mission, and obviously Oakley's sneaker and use that symbol to continue spreading this awareness globally.

Caroline: I am just speechless. This is incredible. These are the things that we all wished for as our children were growing up. And this is amazing that you're able to achieve this and bring us forward.

So this is. I'm so delighted.

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

Lindsey: You know, I think the biggest thing as a food allergy parent, you want to know that you're not alone,

right? There's so many food allergy families out there that are or people that are affected by the loss of someone from food allergies. So, you know, knowing that you're not alone, you know, make sure you reach out to us, a great community of food allergy families,

whether you're a parent,

if you're a teacher, a coach, just someone that wants to protect or help others, reach out to us because we provide the education to the schools, you know, making sure that they have undesignated epinephrine, better protocols in their school.

You know, we can help with that solution.

So please reach out to us. Join our ambassador program, host a red Sneaker day or, you know, or simply share Oakley story.

Because that matters. Every action.

And so please reach out to us. We would love to help.

Caroline: Well, thank you so much for the good work you do and the lives that you're saving and just how you're changing the world. We all appreciate that work and thank you most of all for being with us today.

I know you're so busy, so thank you so much.

Lindsey: This was so fun. Thank you for allowing us to be on here and to spread the word.

Caroline: You're very welcome.

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