He Won Beast Games, Now He’s Finding A Cure for His Son | Jeffrey Allen

On this special episode, Kerri Fitzgerald sits down with Jeffrey Allen, the winner of Amazon Prime Video’s Beast Games and $10 million, the largest prize in game-show history. Jeff’s goal for joining MrBeast’s reality competition was to raise awareness and funds for a rare genetic condition that his young son has—creatine transporter deficiency (CTD). Jeff talks about the journey to understanding his son’s diagnosis, how the newfound platform and notoriety have expanded the reach of his mission to find a cure for CTD, and how his two sons inspire him to be the best person and father. 

Key Highlights: 

• Hear about Jeff’s quest to beat out 999 people on Amazon Prime Video’s Beast Games, a daring game show hosted by MrBeast. 

• Learn about creatine transporter deficiency (CTD), the rare genetic condition that Jeff’s son has and his mission to find a cure for CTD. 

• Hear about how Jeff has partnered with the Association for Creatine Deficiencies to make bold advancements in research and development for a treatment for CTD. 

• Be inspired by Jeff’s perspective on being a father and caregiver for a son with a rare condition. 

Transcript:

Kerri Fitzgerald:

Hello and welcome to a very special episode of My Hero 360, the storytelling platform that features incredible individuals who are using their voice and experience to advance the awareness and advocacy for different health conditions. My name is Kerri Fitzgerald, and today I am joined by Jeff Allen, or Player 831 as some of you may know him from the hit Amazon Prime Video show, Beast Games. Jeff, thank you so much for joining us today.

Jeffrey Allen:

So glad to be here, Kerri. This is awesome.

Kerri Fitzgerald:

As I mentioned, you were a contestant on Beast Games. You managed to beat out 999 other individuals on the show for the top prize, $10 million, the largest cash prize in entertainment history. I know you mentioned on the show that your older son, Jack, is a MrBeast enthusiast, and he made you familiar of the game and got you to think about trying out for the show. What made you have the interest and want to do this?

Jeffrey Allen:

First, thanks for having me on. You’re right, Jack, my oldest son introduced me to MrBeast a couple of years ago, and I’ve heard of him obviously and saw him on some podcasts, but never watched his main channel on YouTube until my son. I’m like, “Oh, this is pretty cool stuff.” Then it was earlier in 2024 where an ad that said, “MrBeast’s Beast Games,” I’m like, “Oh, my gosh, what is this?” I clicked on the link, and it said, “The largest game show ever. Largest cash prize ever.” I’m like, “Oh, this is so cool.” I’ve never applied for a game show; I’ve never done anything like this. I’m like, “I can be a cool dad to Jack.”

But also, the deeper meeting was, can I go on and have a platform to tell Lucas’ story, his little brother who’s got a rare disease? It was too good to be true, but this is one of these things where I had other stuff going on, so I set alarms in my phone, put it on my whiteboard for the final day to submit the application. I did. But I think one thing that’s crazy is, you mentioned I beat out 999 others. It actually started before that with 2,000. It happened just about a year ago, right this moment. I think back, and it’s a miracle. It’s a miracle that it all played out the way it did. But much thanks to Jack and to Lucas for the inspiration.

Kerri Fitzgerald:

Like you mentioned on the show, you talk about how your goal was to use this platform, and potentially the money if you went on to win, to really advance the awareness of this condition, this very rare genetic condition that your son has, creatine transporter deficiency, to advance the awareness and also to help with research and development for a potential treatment. SCan you talk a little bit more about how you and your wife, your family, came to learn that your son had this condition and what your thoughts were about all of that?

Jeffrey Allen:

We had the traditional married, we got 2 kids, life is good. With Lucas, our second son, he’s 20 months away from his older brother, and we had 2 kids under the age of 2. It was crazy. A lot of people have gone through it, but once he got to 6 months, 7 months, 8 months, we noticed he was missing milestones, and he just seemed off. He wasn’t as verbal, crying or babbling, wasn’t being able to sit up. He would fall over, just off sitting, and we said, “Something’s going on.”

We started going through to our pediatrician, then to a specialist, and we hooked him up to essentially every machine. But it took us 20 months to finally figure out that he had creatine transporter deficiency. It was a hard year and a half. I’m the eternal optimist, “Hey, everything’s okay. He’s just behind. No big deal. He’ll catch up.” My wife, God bless her, is very pragmatic and just starting to think, “Okay, what if not? What do we need to do to try to help him?” Which is probably why we’re together. I think we’re a good pair. But once we got the diagnosis, it was bittersweet because we have the answer, but there’s no solution, there’s no cure, there’s no therapy, there’s no treatment. We were at an impasse and we didn’t know what to do.

Kerri Fitzgerald:

Can you talk a little bit more about the condition, just for people who are not aware of it because it is rare? What are some hallmarks of getting that diagnosis?

Jeffrey Allen:

He presents with some unique conditions. First, there’s autistic-like behaviors. Two, he’s hypotonal, so you’re not very strong, you’re falling over. Kids also present with seizures. Fortunately, Lucas does not. Just cognitively and developmentally delayed. Once he presented with these, we didn’t know. We did 3 different hearing tests to see, “Maybe is he deaf? Can he not understand us? Is he having trouble seeing?” We had no clue. But the hallmarks of this is someone who’s significantly cognitively and developmentally delayed and just never seems to catch up.

Kerri Fitzgerald:

What was your reaction to… As you started to understand this condition, how did you personally, as a parent, as a father, deal with that?

Jeffrey Allen:

That’s a great question. I think especially as a father, a lot of fathers with rare disease kids just white-knuckle it and figure, “Hey, we’re going to figure it out,” and don’t chat about it much with people. I remember I had a couple friends who would go out of their way to ask me how I was doing. I remember these conversations specifically, and it was the outlet that I needed to be able to say, “I don’t know what to do.” It gave me the space to be vulnerable. As a father, you want to lead, you want to be the strong foundation, but I think it’s important to really express how you’re feeling.

For me, it was trying to be there for my family, trying to help find solutions for Lucas, but also surrendering to, “This is the life that we have.” To get deeper, “Perhaps this is the life that Lucas’ soul chose and there’s a reason for it.” I don’t really subscribe to everything happens for a reason, but I subscribe to, there’s a reason in everything that happens. For me, I went on this journey to figure out what is the purpose that this is going on with our family. Man, Lucas has taught me so much. So many blessings have come through this. It doesn’t mean life is easy, it doesn’t mean it doesn’t have challenges, but I’ve been able to see the beauty in the bumps and ultimately find the blessings in all the challenges that happens with a kid with a rare disease.

Kerri Fitzgerald:

Earlier you brought up an interesting point of… I imagine it can feel a little isolating when you learn about this. You don’t know perhaps other people who are going through something like this. What helped you? What was most impactful to you and your family? Was it people asking how you’re doing? How can other people help families or friends who are going through something?

Jeffrey Allen:

I remember I went on Twitter at the time, and I was searching. I’m like, “There’s got to be a cure. Someone’s got to know something.” I found some tweets on creatine transport deficiency, and I might have replied to it. Then somebody direct messaged me, her name is Laura, she’s a mom of a son named Rohan, and said, “Hey, are you familiar with the Association for Creatine Deficiencies (ACD)? I would love to introduce you.” That’s how I got introduced to the nonprofit ACD, which I’m now the vice chair on. Just her reaching out changed everything for me.

I tell her almost every time I see her, connect with her, like, “Thank you so much for reaching out.” I think if you are a parent with a rare disease, reaching out to others who are early in the journey, but also reaching out to other people in your community, like dad to dad, “How are you doing? Is there anything you want to talk about? What’s been the latest challenge? What’s been the latest blessing?” I think just being there for others, because everybody processes this differently. Laura’s outreach to me, from the onset, changed everything for my family and changed everything for how I was going to approach this disease for my family.

Kerri Fitzgerald:

Other people that we speak to on the My Hero 360 platform, many of them mention that finding a patient or advocacy group similar to the one you just mentioned is a game-changer for them. It provides community, it provides a better understanding, education. You mentioned the Association for Creatine Deficiencies (ACD). They have an incredible goal right now. They are trying to raise $5 million this year, in 2025. Can you talk about some of their goals and as well as yours for the future of CTD research and treatment?

Jeffrey Allen:

Early on, it is I want to find a solution for my son, and obviously that is the highest good. I want to help Lucas. But once I started understanding this condition and this disease, I realized, it’s bigger than Lucas. It’s for children who have not even been born yet. How do we eradicate this disease or this condition? When we look at CTD, we have got to go, “Okay, what can we do to get more creatine to the brain today, but also longer term, how can we get gene therapy to help kids or to even help mothers who are carriers?” This is an X-linked disease, so mothers are traditionally the carriers of this condition. My wife is not a carrier. Lucas had spontaneous, so it was de novo.

Kerri Fitzgerald:

Oh, wow.

Jeffrey Allen:

It’s helping with Lucas, but also zooming out and going, “How do we help the greater population of kids with CTD?” ACD is looking at all these things. We’re looking at how do we repurpose drugs, how do we create new small molecules? Again, we’re not doing it. We’re helping fund and help hold researchers accountable. Then, we have some amazing people doing gene therapy, which that stuff is so over my head. But I think, if there’s ever a great time to have a child with CTD, it’s now. One, people all across the world have heard of CTD because of Beast Games, which is great. With AI, the science and technology is starting to catch up. Also, creatine is getting so hot, and not just bodybuilder athlete world, but just normal people are saying, “Hey, you should take this for overall health.” I saw a study that came out yesterday about pregnant women taking five grams a day is great for their stamina. SoAgain, I don’t wish CTD on anybody, but if there’s ever a time to have the focus on creatine, it’s now.

Kerri Fitzgerald:

Your platform, the Beast Games platform is, like you said, just expanding the reach and knowledge on this.

Jeffrey Allen:

I am forever indebted to Jimmy, MrBeast, and the Beast team. It was an adventure for a lifetime. It was so fun, but this is this platform to turn my fight into a global call to action is something I am forever grateful for.

Kerri Fitzgerald:

Let’s talk a little bit more about Beast Games. What would you say has been the most rewarding experience since the show ended?

Jeffrey Allen:

I didn’t know what to expect. I didn’t know. I remember talking to someone at MrBeast like, “Yep, this could be huge or it could not be. You just have to wait and see.” But the most rewarding is, well, perfect strangers will come up and talk to me and mostly children. I’d say the number one question they ask me isn’t, “Hey, tell me about MrBeast.” Or it’s, “Hey, what have you bought with the money?” It’s, “How’s Lucas? Have you found a treatment?” I get goosebumps thinking about it because it’s just neat to see young children practice the ultimate precept of loving your neighbor. They don’t know Lucas from Adam, and they’re expressing compassion for him. For me that’s like, “Ah, that is the most rewarding thing I’ve felt.” Quantitatively, yes, $10 million, awesome. I have a platform that I can now share his story. Sweet. But seeing people’s hearts transform is the ultimate gift.

Kerri Fitzgerald:

I imagine the money helps you feel some security for Lucas’ future.

Jeffrey Allen:

Oh, undoubtedly. It’s one of these things where my wife and I, since Lucas got diagnosed, we’re like, “We want to make sure we can do everything we can so Jack doesn’t have to care for Lucas, that he chooses to help him out, but we don’t want to put the burden on him.” Obviously, winning $10 million allows us to create the structures in place to make sure Lucas is cared for as he ages, and Jack is to be his brother, which is huge.

Kerri Fitzgerald:

The show is mentally, physically, emotionally, psychologically, it touches on all of that, right?

Jeffrey Allen:

It’s crazy, isn’t it? It’s so crazy.

Kerri Fitzgerald:

Yeah. You went into this with your mission, with your goal for your son, but it’s a long time, you’re away from your family. How did you keep that resolve to keep going, keep fighting with this endgame in mind?

Jeffrey Allen:

The games, you just have peaks and valleys, ebbs and flows, and leaning on people, building true relationships, genuine relationships with people is what helped. Then I remember, it was in episode 3 in the cubes, that was probably the lowest I was psychologically. I was just in not a good spot. Getting through that I go, “Okay, all right, I need to get it together. I’m here. I’ve already been away from home long enough; I have to keep going.” I wanted to make Jack proud. I realized the more episodes I go on, the less people there are, the more cameras get in front of my face. “Oh, I can actually tell Lucas’ story.” Once I started talking to cameras and they’re like, “Tell me about yourself. Tell me about your family.” I’m like, “Ah, it’s happening.” My goal was to keep going as far as I could to truly tell Lucas’ story. Then once I got in the top 20, I realized, “Oh, I got a shot at winning this thing.”

Kerri Fitzgerald:

Why were the cubes so difficult for you?

Jeffrey Allen:

Well, I was there with one of my really good friends, Chris, and we were there with someone else from our alliance, and one of the persons, the other gal from our alliance, didn’t want to play the game. I’m like, “What do you mean you don’t want to play the game? How can you not play the game? You’re really going to force Chris and I to choose between us?” I think I played the game differently than other people. I was looking for what can I get of value on the phone that would cause me to eliminate myself? I asked for a phone call with Elon Musk because I was trying to go between Tesla, which is an energy company, and Neuralink, the brain, can he figure out how to get creatine to the brain? Again, he’s running 5 companies; he’s super busy. Didn’t happen. Still open for the phone call, Elon. Give me a call.

Kerri Fitzgerald:

There you go.

Jeffrey Allen:

I felt like, “Oh my gosh, what am I doing here? I haven’t seen my family in 2 weeks. I’m a silver-haired guy in this world of younger 20- and 30-year-olds. What am I doing here?” I just started questioning everything. Once I got through that, I was like, “Okay, Jeff, get it together, power through, time to man up, let’s go.” I was able to use that valley of psychological despair and used it to power me until at least episode 8.

Kerri Fitzgerald:

That’s awesome. How did your family feel when you went? I know we saw them on the show, and they were elated. What did they say afterwards?

Jeffrey Allen:

A lot of the stuff that you might not know, and I don’t even know if I’ve told this story, but in episode 8, my family, Jack and Jen, come to visit, and it was one of the best moments of my life. That was episode 8. The next night, we filmed episode 9. The next night, we filmed episode 10. After they filmed episode 8, they’re like, “Hey, you can go home, Jack and Jen, or you can stay, and if your loved one gets eliminated, you fly home with them. Or if they make it all the way, you can be here for it.” Jack and Jen were like, “Of course, let me stay.”

Kerri Fitzgerald:

Wow.

Jeffrey Allen:

They stayed. I had no clue that they were still there. They got called in the middle of the night. We usually film at night. They got called at 2:45 in the morning and said, “Hey…

Kerri Fitzgerald:

Oh, my gosh.

Jeffrey Allen:

“…We’ll send a driver to pick you up, take you to the studio.” They get into the studio, and someone comes in and goes, “Okay, 2 things are going to happen. He’s still in the game. We’re either going to bring him into you because he got eliminated or we’re going to bring you out to him because he won.” This is so cool to think about. Obviously, I got the first briefcase.

Kerri Fitzgerald:

Yes!

Jeffrey Allen:

Which is nuts.

Kerri Fitzgerald:

It is.

Jeffrey Allen:

They heard these cannons, they heard confetti, and they thought that the last challenge was just starting. Then, someone from the Beast team comes into the room and goes, “You ready to come with me?” They… I love it. It makes me emotional. They come out, and that’s when they discovered I won. That’s when I discovered that they were still here. It was a super special moment. I remember Jen going, “We’re going to find a cure for Lucas.” And Jack going, “How are we going to get all this money home?” It was awesome.

Kerri Fitzgerald:

You had no idea they were still there?

Jeffrey Allen:

No.

Kerri Fitzgerald:

Wow.

Jeffrey Allen:

Zero clue.

Kerri Fitzgerald:

Wow.

Jeffrey Allen:

I was so ready in my mind like, “Oh, I’m going to call my wife. I’m going to tell her, ‘Hey, I got some bad news. I didn’t win $5 million. I won $10 [million].'” But they saw the 2 pyramids…

Kerri Fitzgerald:

Wow.

Jeffrey Allen:

They figured it out on their own.

Kerri Fitzgerald:

Wow. Now you had to keep this a secret?

Jeffrey Allen:

I did for 2 reasons. Obviously, I had an NDA and it’s one of these things where it’s $10 million, not worth violating the NDA. And 2, I remember the producer, Sean, of the show told us, “Hey, everything you went through, the ups and downs, the experience, believe it or not, people who watched at home will feel similar things. Do not rob that from people, especially your loved ones.” I just put my family on a wild goose chase, like, “Hey, I think I went far enough to tell Lucas’ story. I’m not sure.” Then as we got closer to the end, I’m like, “Yeah.” I’ve seen them a ton of times. I went on vacation, I did not lead on that we won it all. Nothing changed in my life. It was super neat that they got to experience it firsthand.

Kerri Fitzgerald:

That’s awesome. Your 8-year-old kept the secret.

Jeffrey Allen:

Which is crazy.

Kerri Fitzgerald:

I would’ve been bursting at the seams at eight. How did that…

Jeffrey Allen:

That’s the biggest challenge of them all. It was twofold. First, in my mind, I’m like, “Oh, my gosh.” Because I would talk to him about, “Hey, it’s super important that we don’t share this.” Then I found out a little bit later, my wife showed him the NDA, like, “Hey, here’s the NDA.” She exaggerated a little bit, “Not only do we lose this money, we have to pay a million dollars.” It was a little bit of carrot and stick. But even when the episodes came on, he didn’t tell his friends like, “Hey, I was in the city. I’ve been here. I met MrBeast.” He’s a sweet little righteous kid who wants to do good.

Kerri Fitzgerald:

That’s amazing.

Jeffrey Allen:

I’m proud of him.

Kerri Fitzgerald:

That’s amazing. Very responsible. That’s incredible.

Jeffrey Allen:

I know. He’s teaching me more.

Kerri Fitzgerald:

We’ve been talking a lot about your son. I want to ask, how has your son, both of your sons, but in particular Lucas, how has he changed your life and perspective on things?

Jeffrey Allen:

I shared it before. There’s a reason behind everything. I think he has changed it tremendously. He’s the one who suffers with this condition, but he’s the one who is probably the most happy and joyful. He doesn’t complain about what happened yesterday. He’s not worried about what’s going to go on tomorrow. He’s truly in the present moment. I got to remind myself a lot, but he just encourages me to be here and be present.

Also, this was an early practitioner shared with us like, “Hey, I know you want to help Lucas, but there comes a point in time where you have to remind yourself, you’re not just fixing him, you need to connect with him.” He just allowed me to be more present and understand that there’s challenges that come up, but there is beauty in these challenges.

There is blessings in these challenges. But the crazy thing is, it’s up to me to either decide, is it a blessing or a curse? He’s helped me gain tremendous perspective. I think, from a family, we’re not just trying to go, “Hey, can we upgrade our house? Can we get a promotion? What’s the next vacation?” We realize that our life is bigger than us. Our life is really centered around Lucas, and there can be a ton of fulfillment in having your life not be about yourself.

Kerri Fitzgerald:

He’s very lucky to have you and your wife and his brother, doing all of this for him. It’s incredible. To that point, after Beast Games, you recently did another challenge, Ruck 4 Rare. You walked 365 miles in 18 days carrying the weight of your son Lucas. What was that like? Tell us about that.

Jeffrey Allen:

It was a challenge that my friend from the Games, Jeremy, number 991, we thought about this actually when we were on the island in Panama in episode 5. This is even before I won.

Kerri Fitzgerald:

Wow.

Jeffrey Allen:

Like, “Hey, how do we spread the word more about his condition?” I agree to stuff before I’ve really thought it through. I’m like, “Oh yeah, yeah, sounds good.” Then I’m like, “Okay, I’m not an endurance athlete. I don’t know if I can do this.” But it was one of these great reminders like, “Sign up, you’ll figure it out.” We walked from the desert on the Nevada-California border, Death Valley, all the way to Ventura, to the ocean, rucking the weight of Lucas. It was awesome. You can ask Jeremy, I tried to weasel my way out a couple of times, like, “Maybe we should delay it. I don’t know if this is the right time.”

But I’m so glad it went the way it did. We raised some money to fund research too. But more importantly, I had the outpouring of support from people all over the world who want to help and want to support was just overwhelming. That was just season 1 of Ruck 4 Rare. We’re definitely going to do a season 2, and so you got to stay tuned for that.

Kerri Fitzgerald:

Amazing. That’s awesome. We’ve talked a lot about the Association for Creatine Deficiencies. Where can people learn more, donate, help in any way that they can?

Jeffrey Allen:

We have some huge goals. Believe it or not, $10 million is just a drop in the bucket to try to cure a rare disease. We probably need closer to $40 to $50 [million] to have a clearer pathway. You can go to creatineinfo.org, you can donate there and learn a ton more. But even if you have any questions, you can DM me. The best way to catch me is on Instagram at @Legacy.831. You can follow my journey too on YouTube @Legacy831official.

Kerri Fitzgerald:

Awesome. Jeff, we like to conclude our My Hero 360 interviews by asking the same question of every hero. What would you tell your younger self knowing what you know now?

Jeffrey Allen:

Just go for it. Go for it, and also understand that, do it with other people. I think true change comes from choice, but lasting change comes through connection. Zero chance I would’ve won Beast Games without the people around me and the people who helped. There’s zero chance that I would’ve been able to be as good of a, and I’m trying to be better, a good father of a rare disease son without people’s support. I think connect with others, be outward focused, but take the chance and go for it.

Kerri Fitzgerald:

You’re doing that. Thank you, Jeff. This is amazing. You’re such a positive light for other families, caregivers who are going through something similar. We really appreciate you taking the time with My Hero 360 today.

Jeffrey Allen:

Awesome. Thanks for having me.

Kerri Fitzgerald:

Thank you.

Jeffrey Allen:

Enjoyed it.

Kerri Fitzgerald:

Thanks.

–

Connect with Jeff Allen: 
https://www.legacy831.com/  
https://www.instagram.com/legacy.831/ 
https://www.youtube.com/@legacy831official  

About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. 

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