The Path with Becky Quick: A Beast of a Journey 3/2/26

Summary

Squawk Pod – The Path with Becky Quick: “A Beast of a Journey”

Air Date: March 2, 2026
Host: Becky Quick (CNBC)
Guest: Jeffrey Allen (Player 831, winner of Mr. Beast’s Beast Games; rare disease parent advocate)

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Episode Overview

This episode of “The Path,” hosted by Becky Quick, centers on the journeys of parents whose children have rare genetic diseases—exploring the emotional ups and downs, the relentless hunt for diagnoses and treatments, and their efforts to raise awareness. The highlight is a heartfelt interview with Jeffrey Allen, a father who entered and won the record-breaking “Beast Games” game show (hosted by Mr. Beast) to shine a global spotlight on his son’s rare disease and to fund research for a cure.

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Key Topics & Insights

1. Introducing Rare Disease Parenting

[01:44 – 03:08]

• Becky shares personal context: Her daughter Kaylee has Syngap1, an ultra-rare genetic condition that leads to seizures, developmental delays, and autism.
• Expresses gratitude for the rare disease community and the engagement of listeners.

“There are only about 1,700 other people in the world with this diagnosis... she only produces about half of the Syngap protein that’s needed for brain development.”
– Becky Quick [01:52]

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2. Jeffrey Allen’s Family Story and the Diagnostic Odyssey

[03:17 – 09:39]

• Jeffrey introduces himself as a dad of two: Jack and Lucas, the latter of whom has creatine transport deficiency (CTD), a rare disorder.
• Shares the early realization that something was different with Lucas: missed developmental milestones, low tone, speech and communication delays.
• The diagnostic process was long and full of uncertainty, involving various specialists, extensive tests, and nearly two years to arrive at a diagnosis.
• Both Becky and Jeff stress the lack of a "playbook" for parents navigating rare disease diagnoses, and how many families may give up amid these challenges.

“There’s no roadmap. There’s no playbook.”
– Jeffrey Allen [08:24]

“A lot of people either... go ‘my son or daughter is just different,’ or they kind of give up… I don’t blame them... because it’s hard and it’s sad.”
– Jeffrey Allen [09:39]

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3. Emotional Impact and Processing Grief

[11:01 – 12:22]

• Both Jeff and his wife Jen processed Lucas’ diagnosis differently: Jen turned to grief quickly, while Jeff took longer and maintained optimism until he realized the scientific and medical limitations.
• Receiving a diagnosis when no treatment exists is bittersweet: “It was super bitter for us because there was no treatment... with CTD, there was: ‘here’s what you have, there’s no next steps.’” – Jeffrey Allen [12:03]

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4. Family Dynamics and Sibling Impact

[14:21 – 16:29]

• Jeff and Jen are mindful that Lucas’ brother Jack not be forced into the role of caregiver out of obligation, but choose it if he wants.
• Siblings of rare disease kids mature quickly, gaining empathy and perspective.

“As a parent, it’s your first concern: what happens to my child after me?”
– Becky Quick [14:51]

“They [siblings] grow up fast. They get a lot of perspective early on of what matters.”
– Jeffrey Allen [15:51]

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5. Jeffrey Allen’s Career and Being Prepared for Caregiving

[16:44 – 18:06]

• Jeff’s work in healthcare and home care prior to Lucas’s birth “prepared” him with unique skills for Lucas' needs—a coincidence he chalks up to fate or higher purpose.
• Both Becky and Jeff discuss feeling that their children—and challenges—were “given to them for a reason.”

“I think Lucas’ soul chose this body, chose us as parents...”
– Jeffrey Allen [17:38]

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6. Differences in Coping and Moving Forward

[18:23 – 20:02]

• Jeff and Jen play to their strengths: Jeff as the “North star” and optimist, Jen as the pragmatist and planner—each needing the other's approach to move forward.

“If it wasn’t for—and I have had to lean into her and she’s had to lean into me... Make each other better.”
– Jeffrey Allen [19:07]

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7. Entering and Winning Mr. Beast’s Beast Games

[21:51 – 29:48]

• After being laid off, Jeff applied to compete in Beast Games—a high-profile competition with a $10M prize—intending to boost awareness for CTD.
• Initially skeptical of his chances, he records a simple webcam application with Lucas, eventually is selected, and then keeps the planning from his wife Jen until he’s certain. Jen’s reaction: “If you’re gonna leave, you better win this thing.” [24:31]
• The competition is intense—he’s one of the oldest, relies on social skills and steady nerves. Emphasis is on being better than 50% of competitors each round.
• Emotional highlights: The psychological challenge of being away from family, and anchoring his motivation to “why am I here” and Lucas’ cause.

“My goal is to tell Lucas’s story.”
– Jeffrey Allen [24:31]

“It wasn’t as hard as I thought it would be because... be much harder to look back if I quit.”
– Jeffrey Allen [28:18]

• Dramatic win: “We had 10 briefcases to choose... I guessed it on the first one... it was mostly divine. It was one of those things where I’m like: I know it’s in this briefcase.” [28:42]

• Emotional aftermath: “Jen hugged me and said: ‘We’re gonna find a cure for Lucas.’” [29:21]

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8. Life After the Win: Money, Research, and Advocacy

[29:48 – 31:23]

• The $10M prize was both financially and strategically transformative. Jeff immediately sought accountants and tax advisors to secure family well-being and prioritize research funding.
• Despite windfall, maintains simple life; urgency remains to leverage money/platform for Lucas and the CTD community.

“Not a ton has changed, but the urgency to, kind of, go—okay, we have this platform, we have the money to make a change... We gotta go.”
– Jeffrey Allen [31:12]

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9. Progress in CTD Research and the Impact of Parental Advocacy

[33:04 – 36:56]

• Jeff explains work with the Association for Creatine Deficiencies—parent-led, directs global CTD research funding.
• Detailed recent research progress (Gene Therapy Consortium, grants, fellowship, drug discovery)—acceleration due in large part to increased funding and exposure.

“First 10 years of the organization, we funded maybe $50k. In the past year, over a million dollars…”
– Jeffrey Allen [34:28]

• Breakthroughs on the horizon: Pro-drug treatments to get creatine across blood-brain barrier, with implications for other major neurological diseases.

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10. Barriers and Slow Pace of Science/Drug Development

[36:12 – 36:56]

• Becky and Jeff reflect on how “science is slow”—not just discovery, but regulatory and commercial hurdles.
• Frustration with timelines, even as things are accelerating, and drive to not lose hope or momentum.

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11. The Power of Public Awareness: Ruck for Rare

[37:07 – 39:09]

• After Beast Games, Jeff launches “Ruck for Rare”—an endurance challenge rucking (walking with weight) across California, symbolizing the burdens families carry while raising awareness and funds.
• Plans to repeat and grow the event for rare disease fundraising. Children approaching him are most interested in “how’s Lucas”—not the fame, but the cause.

“Kids stop me and say: ‘Are you the Beast Games guy? ...How’s Lucas? Have you found a cure?’”
– Jeffrey Allen [39:10]

• Becky underscores the importance of kids learning to accept and appreciate those who are different.

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12. Changing Hearts and Sustaining Hope

[40:14 – 42:09]

• Both agree culture, not just funding, is critical: “People have to connect to it, want to see it through... We need people who are truly invested.” [40:54]
• Jeff shares that connecting with kids who are different changes everyone, and is hopeful that awareness will spark broader change.

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13. Hopes for Lucas, Kaylee, and the Future

[42:17 – 46:48]

• Jeff’s hope: For Lucas to inspire, to fulfill his purpose, to help build a future where rare diseases are diagnosed and treated at birth.
• Becky echoes, wishing for Kaylee to communicate more, find her purpose and happiness, and for treatments to eventually benefit all.

“I realized finding a therapy for Lucas is not just about Lucas. It’s about Rohan, it’s about Cadman, it’s about Brody... and other rare diseases.”
– Jeffrey Allen [43:42]

“The bittersweet truth... we’re going to find stuff for our children that’s going to help for sure... but the true beneficiaries are our families who haven’t even started yet.”
– Jeffrey Allen [46:26]

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Notable Quotes & Moments

• “There’s no roadmap. There’s no playbook.”

  • Jeffrey Allen on the struggle navigating rare disease diagnostics [08:24]

• “She’s amazing and doesn’t mince words... If you’re gonna leave, you better win this thing.”

  • Jeffrey Allen, on his wife Jen’s support for Beast Games [24:31]

• “It’s all a miracle, but it’s also tragic to think that I have to go on the largest game show ever for people to know about my son.”

  • Jeffrey Allen, reflecting on raising awareness [29:29]

• “Money matters a ton... We just announced we are funding two (major projects)—one out of Stanford, one out of Johns Hopkins.”

  • Jeffrey Allen, on the impact of increased funding [34:35]

• “For the world to care about rare diseases, people’s hearts need to be changed.”

  • Jeffrey Allen [40:54]

• “I know our family can handle whatever it brings... but my hope for Lucas is that he continues to inspire others... I can imagine a world where rare diseases... can be diagnosed at birth and get a treatment and have a life of their choosing.”

  • Jeffrey Allen [42:17, 43:42]

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Key Timestamps

• 01:44 – Becky introduces her daughter’s rare disease (Syngap1)
• 03:08 – Jeffrey Allen introduces himself and Lucas’ CTD
• 07:28 – The difficult diagnostic journey and accessing experts
• 12:22 – Absence of treatment; the emotional sting of a diagnosis
• 14:21 – Family finances, future, and sibling dynamics
• 16:44 – Jeff’s unusual preparation for caregiving, career background
• 17:38 – “Lucas’ soul chose this body, chose us as parents...”
• 21:51 – The Beast Games backstory and application
• 24:31 – Jen’s support and determination
• 25:46 – Strategies, forming alliances, and social gameplay
• 28:42 – Winning Beast Games, the power of the story
• 31:12 – Using the prize: supporting research, family, and advocacy
• 33:04 – Advancements in CTD research; parent advocacy
• 36:12 – Frustration with system/slow science
• 37:07 – Ruck for Rare event and symbolic value
• 40:54 – The real pathway to progress: changing hearts
• 42:17 – 46:48 – Hopes for Lucas, Kaylee, and the next generation

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Final Takeaways

• Raising a child with a rare disease is a journey with no script, requiring resilience, creativity, and community.
• Parental advocacy, visibility, and funding—sometimes from unconventional sources—are making tangible progress in rare disease research.
• The humanity behind these stories—the moments of humor, pain, and love—carry lessons for all families, and the hope that change is possible for future generations.
• This episode is a moving testament to the power of storytelling, persistence, and love in the face of enormous challenges.

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End of summary.

Transcript

[Schwab Representative]

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[AT&T Business Wireless Advertiser]

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[Jeffrey Allen]

AT&T business Wireless Connecting changes everything. Lucas his soul chose this body, chose us as parents. For the world to care about rare diseases, people's hearts need to be changed. You know, we can't just have money be thrown into the problem. 831 is blindfolded and can no longer see what's going on. Beast Games application Mr. Beast, I don't have a job right now. Like I think I can apply $10 million. It's all a miracle. But it's also tragic to think that I have to go on the largest game show ever for people to know about my son.

[Becky Quick]

Keep going. Good job.

[Jeffrey Allen]

Great job Bear.

[Narrator/Host (Becky Quick)]

I'm Becky Quick. Welcome to the Path from CNBC Cures, a podcast series about the people, the struggles, the science, and sometimes, yes, the miracles of rare disease. I'm a mom of a child with a genetic disease. My nine year old daughter Kaylee has one of the thousands of rare genetic conditions, diseases, disorders, illnesses that are lurking in the basic code that makes us who we are. Kaylee's condition is called syngap1. She's part of a very small patient group. There are only about 1,700 other people in the world with this diagnosis. Essentially, she only produces about half of the syngap protein that's needed for brain development. That means that she has seizures, developmental delays and intellectual disabilities. She also has autism and struggles to communicate.

[Jeffrey Allen]

6.

[Becky Quick]

Good job.

[Narrator/Host (Becky Quick)]

7 if you've been listening to our podcast or watching our video cast on YouTube, thank you. Thank you so much for opening your hearts to my family and our daughter's story. And thank you for sharing your stories as well to our CNBC Cures Email, inbox, on social media and in the YouTube comments. We really love hearing from you. My guest today has a wild story of what happens when you say what the heck? And you do something unexpected for a really good reason.

[Jeffrey Allen]

Most people know me by Jeff.

[Becky Quick]

Really?

[Jeffrey Allen]

Yeah.

[Becky Quick]

Okay, good. Then I'll call you that. I'm Rebecca, but I go by Becky because I'm Rebecca when I'm in trouble with my mother.

[Narrator/Host (Becky Quick)]

Jeffrey Allen, also known as Player831, went on a game show fronted by content creator Mr. Beast, and he won.

[Jeffrey Allen]

Jeff Allen. I'm a dad of two boys, Lucas and Jack. Lucas has a rare disease called creatine transport deficiency.

[Narrator/Host (Becky Quick)]

It was all done in the name of raising awareness for or potentially curing rare disease.

[Jeffrey Allen]

We found out in 2019, and ever since then, we're trying to spread the word. I was crazy enough to sign up for the Beast Games, the largest competition show in history of the world, to tell a story. Nice job, buddy.

[Narrator/Host (Becky Quick)]

Jeffrey Allen took an extreme route to tell his family's story. Beast Game Season 1 attracted 50 million viewers in its first 25 days streaming on Amazon Prime. He joined us on Squawkbox last year to talk about the experience and the public attention. It all sounded very familiar. Our stories and challenges about parenting a child with a rare and specific condition sort of intertwine. And like many rare disease families, it all started out pretty great.

[Jeffrey Allen]

You know, I always knew I wanted to be a dad.

[Becky Quick]

And so then you have your two sons and what did you think about your family life at that point?

[Jeffrey Allen]

It was great. You know, I mean, it's. I grew up with four sisters. I always wanted a brother. So when I had my. When I had Jack, I was like, this is awesome. And then when I had Lucas, I'm like, oh, my gosh, this is. You know, I have friends who have brothers, and not only are they brothers, they're best friends. And so for me, I got go, wow, these are. These are going to be best friends for life and are going to have families together and hang out together. And so I was just, I was super excited about it. And like, for me, I live next door to my wife's sister, like, literally next door, and I imagine them living next door to each other, and Jen and I get to visit the grandkids. So just, life was good. I was happy.

[Becky Quick]

What happened? When did you first started noticing developmental delays? Maybe with Lucas, what happened?

[Jeffrey Allen]

Yeah, Lucas was a beautiful boy, like, just handsome like Jack. His baby pictures, he looked like an old man, but Lucas was just beautiful and Handsome, but he was quiet, you know, didn't make a ton of noise, didn't cry a ton. And. But once he. I think, like, seven or eight months, when you're supposed to start seeing milestones of, like, sitting up or crawling differently. Lucas wasn't hitting them. No.

[Becky Quick]

Please, no.

[Jeffrey Allen]

And Jen's very pragmatic, like, we should probably check this out. And I'm the optimist kind of going, he's just a little bit behind. No big deal. We can't compare to Jack. And we kind of met in the middle. We, you know, went to doctors. Doctors said, pediatrician, said everything's good. Then went to kind of an early interventionalist and said, yeah, he's certainly developmentally delayed, but still, these. So vague. We don't know what's going on. So our diagnostic odyssey started then probably at eight months, and went on for another year and a half until we got diagnosed with creatine transport deficiency. Creatine is one of the primary kind of energy sources, or it's kind of the energy grid of your body and brain. And when you don't have that energy, your muscles don't develop. Also, your brain doesn't develop. So he was hypotonal, meaning he wasn't that strong. So he didn't have the strength to stay seated up, so he kept falling over. And it was like we were so nervous, we had pads all over our home to protect him. And so that was like, the first thing that we noticed. Then we also noticed he wasn't babbling, wasn't, you know, communicating the way his cousins was. Cousins were. Or his brother was. So we just said, we need to figure out what this is. Like something's up. We don't know what it is, but we'd rather err on the side of. We tried everything and found out then let's just, you know, kind of be hands off and hope for the best.

[Becky Quick]

Who gave you the diagnosis eventually? What. What did it take to find it?

[Jeffrey Allen]

Yeah, it's. We. We first thought he was. Could be deaf. So we went through all the hearing tests. We thought he had some, maybe sight issues. We went through that. We hooked him up to kind of every machine, and, you know, finally we got scheduled for an mri, and we called in a ton of favors, got us in front of the right kind of neurologist who said, you know, in addition to the mri, you should probably get an mrs, because the mri.

[Becky Quick]

What's an mrs?

[Jeffrey Allen]

I don't even know. Spectroscopy. So it measures metabolic levels in the brain. So MRI is Imaging, like, what does the brain look like? Mrs. Is the metabolic levels. So the MRI looked perfect. You know, white matter was perfect. The Mrs. Showed that the creatine stopped right at the blood brain barrier. And that's when we got the diagnosis.

[Becky Quick]

You had to pull in every favor because the system is so hard to navigate that.

[Schwab Representative]

Yeah.

[Jeffrey Allen]

And yes, I think one of the biggest takeaways for me is we're not alone, you know, but as rare disease families. But it's up to us to navigate even once you have a diagnosis. Like working through kind of social workers and trying to get. Make sure you get the services that are needed are hard. But, yeah, for us, we didn't know what tests we should get. Neither did our pediatrician, because it's so unknown. Is like there's no roadmap. There's no playbook.

[Becky Quick]

We went through the same thing with Kayleigh, too. Everything you're talking about going through, the hearing tests, the vision tests, trying to figure out why there are global developmental delays. There's not a playbook for it.

[Jeffrey Allen]

No. And, yeah. And in essence, the system. And again, I'm not kind of coming at the system. They don't know either.

[Becky Quick]

It gets me to the point of thinking that diagnostics is also really important because we talk about these rare diseases, these ultra rare diseases in some cases, and I don't know about you, but I am convinced that for Cayley's disease with synGAP1, there are so many more people than have been diagnosed with it. It's just really hard to get to that diagnosis.

[Jeffrey Allen]

Yeah. And I think a lot of people give up.

[Becky Quick]

Yeah.

[Jeffrey Allen]

Because, I mean, it took us 20 months of diligence. It wasn't like, hey, let's try this this month. It was. That was our. That was the focus of our life, is how do we find a treatment. I think a lot of people either kind of go, okay, my. My son or daughter's just different. Or they kind of give up and go, hey, you know, there. Nobody knows what this is. It's probably some kind of novel mutation. I. I think there's so many families that don't have the perseverance. And I don't blame them. I don't either, to try to find out what it is, because it's hard and it's. It's. It's sad. You know, I just actually remember, you know, talking to Jen. She's like everything I ever dreamt about with a family kind of was the opposite of this, you know, I just. I never, never dreamt of Having a family with a child with a condition that we couldn't help, we couldn't solve. For more. All done.

[Narrator/Host (Becky Quick)]

More. Jeff and his wife Jen shared with us photos and videos of Lucas Journey, including the hard stuff like his baptism. Or this short clip of doctors wheeling off their son in a hospital.

[Becky Quick]

As a parent, you're supposed to do everything to protect your child. When you find out that not only can you not protect them, but there are problems you can't fix from such a young age. What, what did that do to you and to Jen?

[Jeffrey Allen]

We, we process it differently. If she was able to kind of, I think, own her emotions and meaning, she experienced grief a lot sooner than I did. I was trying to kind of be the rose colored glasses, you know, dad, and try to, you know, hey, we're going to figure this out. No big deal. And it wasn't until I actually started doing research and I realized, wow, not only has this condition been around a while, it was discovered in the year 2000. Researchers have been working on it for 20 years and haven't cracked the code. There's no treatment, there's no therapy. So I kind of go, yeah, there, there's, there's no solution, you know, because it's one thing to, like, getting a diagnosis is bittersweet. Like, it's sweet because you're going, okay, at least now I know it was super bitter for us because there was no treatment. Yeah. You know, and you know, so many challenging conditions, whether it's cancer or heart disease. Like, hey, I'm sorry, but you have X cancer. Here's the next steps. Or new chemotherapy or new radiation, whatever it may be. With ctd, there was. Here's what you have. There's no next steps.

[Becky Quick]

What is the diagnosis that a doctor will tell you on this.

[Jeffrey Allen]

Yeah, so creatine transport deficiency, CTD in. There's a lot of creatine studies right now with regard to supplementation. Like, any athlete is taking creatine, but now, like, people are taking it for brain health too. So supplementing creatine helps with your body and your brain. Lucas's body makes it naturally, so he has it running through his blood. Right now there's a transporter that takes it from the blood to the muscles and the blood to the brain. His transporter is defective, so he has everything he needs. But the kind of the bridge that takes it from the blood to the brain is broken and there's no way to bypass, currently the blood brain barrier so his brain doesn't get the energy it needs to develop so you think about syngap1. Like, he doesn't have the energy to create these synapses. What color is that ball? Is it brown or black? Black. So, I mean, if you look at Lucas, he looks like your everyday kiddo. Where he struggles mostly is with communication, behavioral, Kind of fine motor skills. Like, we've had to work really hard on gross motor, but he can jump, skip, run. He's happy. I mean, he is. You know, I. I look at him, and I played college football. Like, Lucas would have been an athlete. You know, if he was neurotubious like his brother, he would be one of the best on his team. So he just. He has it in him, and he loves playing. But, yeah, it's. It's communication, behavioral. He just. His brain doesn't have the energy it needs to function. This is how. How I'm gonna take it for. Yeah, that's good.

[Becky Quick]

Yeah.

[Jeffrey Allen]

Even before Beast games, even before kind of everything changed. Like, our mind and Jen's goal was to make sure that Jack didn't have to care for Lucas. He would choose to care for him. So, meaning, like, it was our job to kind of go, let's try to save as much money as we can. Let's invest wisely so that Lucas can be cared for as he ages. And Jack gets to continue to be his brother first and then caregiver second. We just didn't want to have to put that burden on. On Jack as his brother.

[Becky Quick]

But, you know, as a parent, it's your first concern what happens to my

[Jeffrey Allen]

child after me and Jack's, you know, being a sibling of a rare disease kid is hard. But Jack has asked me, like, mom and dad, like, what happens when you guys aren't here? Like, what happens when you guys die? And I think he asked us at the age of eight, which is just, like, wild.

[Becky Quick]

Yeah.

[Jeffrey Allen]

And, you know, Jen is amazing and doesn't mince words. And like, we told him, you know, like, this is what it would look like. Here's our goal, you know, and I think we're blessed with a great big family. But at the end of the day, if he needs 247 care, I don't want it to fall on Jack. I want Jack to be his brother first.

[Becky Quick]

And I will say siblings of kids with a rare disease or with any special issues, any health issues, I think grow up to be such empathetic people. They just see a side of life that not everybody does at a young age.

[Jeffrey Allen]

They grow up fast. They get a lot of perspective early on of what matters And I think they just have to go through challenges like Jack. Jack's head is always on a swivel because if Lucas isn't getting attention from mom or dad and wants it, he goes for Jack. And whether it's he'll take what Jack, his iPad or he'll pull Jack. Hey, sweet boy. So Jack is just attentive and he's now learning how to redirect. And you know, redirecting.

[Becky Quick]

That's hard.

[Jeffrey Allen]

Is hard.

[Becky Quick]

Yeah.

[Jeffrey Allen]

You know, and then I, before I was in kind of the home care space, so caring for older adults and you learned how to redirect with patients of Alzheimer's.

[Becky Quick]

Okay, so tell me about this. Your. Your life kind of led into some of these paths and this was before Lucas was born.

[Jeffrey Allen]

It's bizarre what happened. So I, I was always in healthcare, so I just, I started in medical devices and then I started working for medical device startups. And once I moved to Silicon Valley, I got into kind of more health tech. And there's a company that I joined named Honor that provides. It's a tech company that is trying to kind of modernize non medical home care. And that just is caregivers, when you think of caregivers for seniors. And so I led some teams there and so I learned all about activities of daily living. So how to help with toileting, how to help with lifting and transferring. All these things that Lucas would eventually need before Lucas was even born.

[Becky Quick]

That's crazy.

[Jeffrey Allen]

Yeah. I literally started the job the month Lucas was born.

[Becky Quick]

You ever feel like Lucas was given to you for a reason?

[Jeffrey Allen]

Of course. Yeah. I mean, I, I don't. There's no other explanation. And I also think that it works both ways. Like Lucas, I think Lucas's soul was perfect. And I think Lucas, his soul chose this body, chose us as parents, you know, And I think for us to be the parents of Lucas is an absolute honor, you know, and I think so. I think Jed and I like have to do something with it.

[Becky Quick]

I feel the same way about Caitley.

[Jeffrey Allen]

Yeah.

[Becky Quick]

You said before that you and Jen processed all of this a little differently. How did she process it? How did you process it?

[AT&T Business Wireless Advertiser]

Oh, wow.

[Jeffrey Allen]

I, I tend to not think through all the details. So I'm like, okay, we're gonna figure it out. You know, I don't know how we're gonna figure it out, but you know, it's more of kind of a North star. We're gonna be good. And Jen immediately and consistently will think about all the stuff that needs to happen. I love you.

[Becky Quick]

Say bye bye. It feels like the male female breakdown is pretty consistently that way. Like, thank God for you North Stars. But sometimes I want to punch you in the face.

[Jeffrey Allen]

Of course, though. And trust me, Jen wants to do the same thing. But. Yeah, but if it wasn't for. And I have had to lean into her and she's had to lean into me. So she's become.

[Becky Quick]

Make each other better.

[Jeffrey Allen]

Yeah. And she's become more optimistic and more kind of okay. Not sure how we're going to figure it out, but we're going to. And I become okay. I think we need to call this social worker. I think we need to talk to this specialist. And I also know he's young, but, like, I do get nervous about what happens when he gets bigger. 12 and 15 and 18. He's already a big boy. It's like, what. What does it look like? Am I going to have to. We're going to have to prescribe medication to. To modify his behaviors? Like, is he still going to be the same Lucas? Are we taking a part of. Away from who he is? So it's a. This is probably why I don't think about it too much. This is why I leave it to Jen because I. I don't like. I don't like to. I just. I don't. I don't like looking at a life for him that we can't help.

[Becky Quick]

I don't like feeling like Cassandra. You know, your mind gets ahead of you.

[Narrator/Host (Becky Quick)]

More to come on the path. Stay with us.

[Schwab Representative]

Trading at Schwab is powered by Ameritrade, giving you even more specialized support than ever before, like access to the trade desk. Our team of passionate traders ready to tackle anything from the most complex trading questions to a simple strategy. Gut check. Need assistance? No problem. Get 24. 7 professional answers and live help. And access support by phone, email and in platform chat. That's how Schwab is here for you to help you trade brilliantly. Learn [e-mail] trading thy ticket lady, Jennifer of Coolidge.

[Becky Quick]

Well, many thanks, good sir. Here is my Discover card. They accept Discover at Renaissance fairs. Yeah, they do here. Discover is accepted at the places I love to shop. Geth with the times. With the times.

[Discover Card Advertiser]

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[Becky Quick]

Yeah, and it sounds pretty good, right?

[Jeffrey Allen]

Discover is accepted at 99% of places that take credit cards nationwide, based on the February 2025 Nielsen report.

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[Jeffrey Allen]

AT&T business wireless connecting changes everything. And then when you're ready, he will take that blindfold off and try to guess it.

[Becky Quick]

So let's talk about the Beast Games. What you thought of with this, how it came across your desk.

[Jeffrey Allen]

So going back to the theme of things kind of fall into my lap in August or In April of 24, I got laid off. Yeah. So I was working for a healthcare startup. I was leading kind of their sales and business development team. Funding fell through and they kind of looked at me and kind of go, hey, sorry. And I. And it was, it was one of the most amicable breakups. I remember, you know, talking to CEO and talking to my boss and I go, hey, I love what you're doing. Thank you for the opportunity. It was also in the kind of the senior space and you know, I'm at home kind of going, okay, I get to be dad at home for a couple months. I'll figure it out. And I saw like on, on the website, like Beast Games season, Beast Games, Beast Games application, Mr. Beast. And I go, okay, Jack loves Mr. Beast. We've started to watch it. Like, let me check this out. And so it said, largest competition game show in history. Largest cash prize in history. And I'm like, okay, I don't have a job right now. Like, I think I can apply. So I just, I set an alarm on my phone and write it on the whiteboard. Like, I think it was May 31st. Last day to apply. Guess what? May 31st comes. I haven't applied yet.

[Becky Quick]

Why?

[Jeffrey Allen]

A little bit of a procrastinator on some things. And it was probably part of my thing is like I was psyching myself out. Like, I need to get a job. Like, who do I think I could actually go on a game show and win on the largest competition show? Like I've never done a game show. And if you know Mr. Beast, it's like huge special effects. The biggest sets ever. My video was just on a webcam and Lucas was with me and I just kind of told my story of what I would do if I won a million dollars, why I want to do it. And I press send and I'm like, hope for the best. And I'm like, in my mind, I'm like, There's no way I'm going to get cast. Like, this is. I'm no fun. And then a week later, I get a call from them. They're like, hey, we. We saw your video. We like it. We want to ask you some more questions. Fast forward a few weeks. They go, guess what in Beast Games. And it starts in like three weeks.

[Becky Quick]

Have you told Jen any of this at this point?

[Jeffrey Allen]

I might. I might have led some, like, some breadcrumbs. But, like, the reason I didn't tell Jen was because Jen is the problem solver. So if I tell her I'm going to be on this, she's going to go, okay, then if you're not here, who's going to drop off the kids who are going to do this? And I'm like, I don't want to do that to her until I know. And so once I found out and I told her, yeah, she was excited.

[Narrator/Host (Becky Quick)]

She was.

[Jeffrey Allen]

She was super excited. And it was one of these things where I knew I always had her support and her. I are different in this way where I'm more spontaneous, more kind of risk taking. And so she's kind of looks at me kind of like, I can't tell you. No, you have to do this. But. But one of my favorite parts is I leave and I kind of go, this is awesome. Like, I get to go. And my goal is to tell Lucas's story. And she looked at me, she goes, screw that. She goes, if you're gonna leave, you better win this thing. I'm in my hotel room going, has the game started? I'm memorizing serial numbers on the bottom of the lamps. Like, I'm trying to, like, wait, why

[Becky Quick]

are you memorizing serial number?

[Jeffrey Allen]

Because I didn't. I didn't know if the games had already started. Like, like, if you, like, if they got us together and go, hey, first challenge is you have to recreate your room. Or, like, I didn't know you were

[Narrator/Host (Becky Quick)]

getting ready for any and all possibilities.

[Jeffrey Allen]

Yes, I was. I was so in my head about, like.

[Becky Quick]

Because you don't know what the game.

[Jeffrey Allen]

I don't know. But I also understand, like, I'm probably the oldest person there, you know, So I was definitely one of the top, in the kind of the highest 10 of ages. Most people in their 20s and 30s.

[Becky Quick]

Oh, my gosh.

[Jeffrey Allen]

Yeah. So it was like. And I'm like, I can't hide my age either with my hair. So I was like, I needed to have, like, an edge. So my.

[Becky Quick]

Not that old.

[Jeffrey Allen]

I know but in beast world, like, Mr. Beast is 27 years old. People who grew up with Mr. Beast are in their 20s and 30s.

[Becky Quick]

Yeah, I'm like Johnny Knoxville. So.

[Jeffrey Allen]

Yeah, no, and I'm with you too. So. So I was just trying to get my mind around what I'm gonna do, and then I realized, like, once I got in, I'm like, I need to make friends. Like. Like, this is. This is a social game where, like, there's no way you're gonna get far on your own.

[Becky Quick]

That's very squid games of you.

[Jeffrey Allen]

Yeah. And so, like, I just. I like to ask questions. I like to be interested in others. So I just started meeting people, and I met an amazing group of folks on the first day who kind of. I stayed with. And, like, one of. One of my really good friends was with me all the way to the top 10. What I quickly realized is if I can just be better than 50% of the people on every challenge, you get to move on. So it doesn't, like, you have to be the best. So it's just. You have to be better than 50%. And so the challenges go on. And it's. Once we got down to, like, episode six, there was 60 people left.

[Becky Quick]

Wow. From 2000 down to 60.

[Jeffrey Allen]

60. And then I kind of go, okay. I just got more focused. They gotta go, hey, why am I here? What am I trying to do? And then I get into the top 20, and I go. I've been able to tell the camera about Lucas. I've been able to. People have interviewed. Jimmy's interviewed me, and asked me about what CTD is. I'm like, this is awesome. Like, I can. I am telling Lucas's story to a global stage. And then I realized, oh, I can. I can win this thing. For your sake, do not let him pick this briefcase. He will take that blindfold off and try to guess it. When I get the final six, like, it's real. And I look around and I know all these people. I've been. I've spent, like, 40 days with them without a phone, without. Without Internet. Like, I. You don't even know what day it is, what time it is, what.

[Becky Quick]

What was the hardest part of. Of all of that?

[Jeffrey Allen]

It's. It's hard to be away from your family and not be able to talk to them. Like, this is the longest I never talked to Jen in my life, but it's. It. The games were very psychological, very mental. They try to put you in situations where you're going to break or have stress. And for Me, it was just always kind of going, why am I here? What is my purpose? Like, my. Like, I always told myself, I desire to receive the platform to be able to share Lucas's story. And then I got to a place where I'm like, okay, I desire to receive the prize so that I can share it with our community or share it with my family. So it just always came back to, why am I here? What is my desire? What is my purpose? And so even on the hard days, it was. It wasn't as hard as I thought it would be because I'm here. Like, be much harder to look back if I quit, or I kind of go, gosh, I can't take this anymore.

[Becky Quick]

Right.

[Jeffrey Allen]

Or have that regret.

[Becky Quick]

So you win. And then what?

[Jeffrey Allen]

Like, at the end of it, I. We had 10 briefcases to choose where the. Where the 10 million dollar check was in. And I got to go first and guess first. And I guessed it on the first one. And I'm telling you, it wasn't. Like, it wasn't poker. It wasn't. I mean, I might have read her a little bit, but it was mostly divine. It was one of these things where I'm like, I know it's in this briefcase. And I knew it before the game even started. So it's just all of us kind of feeling out this new. This new world. And I remember Jen hugged me and said, we're gonna find a cure for Lucas. And. It's a. It's a. It's all a miracle, you know, and so much thanks to Mr. Beast and Jimmy and the whole team. Like, the fact that I get to tell Lucas's story to the world. But it's also tragic to think that I have to go on the largest game show ever for people to know about my son. But it was. Yeah, it's. Was amazing.

[Becky Quick]

What did you do with the $10 million after the government took half? I guess.

[Jeffrey Allen]

Yeah. Well, the strange thing is, is the government didn't take half until it was due, meaning I literally got $10 million wired to me.

[Discover Card Advertiser]

Wow.

[Jeffrey Allen]

Which is so bizarre, you know, Like, I mean, it's. And they didn't give you a ton of heads up. They said, hey, it should come in your account in the next couple days. Within an hour. I look at my account and like, what do I do with this? And so first I called some professionals, some.

[Becky Quick]

Yeah.

[Jeffrey Allen]

Accountants, tax strategists, to kind of go, what. What do I do to preserve this? And how can I. Here's my aim, my ultimate aim is to make sure my family's taken care of. But also I want to fund research.

[Becky Quick]

Right.

[Jeffrey Allen]

So what are some things I could do? So they taught me. I got a. A crash course in personal finance and tax strategy. It was amazing. So, I mean, I learned so much. I mean, and this is probably why I watched so much CNBC last year, is because I needed to figure out what I should be doing.

[Becky Quick]

Yeah, I mean, it's really life changing, not just for you all, but for other families.

[Jeffrey Allen]

100%, you know, and again, like, I think the check was for our families. Like, it's always a check in. Why are we doing this? And are we staying true to why to. Why are we staying true to our aim? And so for us, we still live in the same home, we still drive the same cars. You know, not a ton has changed, but the urgency to kind of go, okay, we have this platform. We have the money to make a change for Lucas and for kids with ccd. Like, we gotta. We gotta go.

[Narrator/Host (Becky Quick)]

We'll be right back.

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[Jeffrey Allen]

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[Keith Landsford]

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[Jeffrey Allen]

Yes.

[Becky Quick]

Yes.

[Jeffrey Allen]

Yeah. Yeah.

[Becky Quick]

There is no therapy for CTD right now. What's in the works. What's in the labs?

[Jeffrey Allen]

Yeah. So for 20 years, 25 years, people have been working on it. Things really changed for us in 2020. So I joined the board in 2020. The board of the board of association for Creatine Deficiencies. It's just a parent led patient advocacy group and we're the primary funder for CTD research in the world, aside from, aside from government grants. And so in 2020 we started the Gene Therapy Consortium where we kind of created this friendly competition among researchers that we would help fund to try to explore gene therapy options. We also got a grant from the Chan Zuckerberg Initiative. It helped build capacity for, for our organization. And then in, in 2021, we started investing into fellowships, so we would start funding fellows, research fellows at organic institutions. You try to kind of build the creaking researchers of tomorrow today. And since then we've probably funded $400,000 worth of research funding in, in those four years. And then in the past year, we funded over a million dollars.

[Becky Quick]

Wow.

[Jeffrey Allen]

And to kind of give you a perspective, the first 10 years of the organization, we funded maybe 50 grand.

[Becky Quick]

Right.

[Jeffrey Allen]

So.

[Becky Quick]

So money matters.

[Jeffrey Allen]

Yeah, so money. Money matters a ton. So. And now we launched this thing called the Race for a cure in 2025 that is like we wanted the institutions to kind of give us their best plans ever to try to get something to clinic. And we just announced that we are funding two, one out of Stanford, one out of Johns Hopkins. We have Purdue is doing some great work. Some places in Canada and Italy are doing great work to do kind of drug repurposing and drug discovery. So there's things happening. The most promising right now is there's some pharmaceutical companies that are really close to clinical trial that would be amazing, which is huge.

[Becky Quick]

Clinical trial for an ASO therapy for what? For clinical trial for what?

[Jeffrey Allen]

For pro drug. For a pro drug that would get creatine to the brain. And there's some researchers I've talked to who think that there's so much focus on creatine right now kind of worldwide, for people like you and I to supplement with. They think that if creatine can get to the brain, it can help with some of these other neurological conditions. And whether it's Alzheimer's or Parkinson's or als, that's kind of in the very early research stage. But I, I feel like they think that if they can get creatine directly to the brain for kids like Lucas, it could help people who are older who are suffering for some challenging neurological Diseases for parents.

[Becky Quick]

The progress never comes quickly enough, even when it feels like it's moving at lightning speed to others. What have been some of the biggest frustrations or barriers you've run up against?

[Jeffrey Allen]

Yeah, I'm used to figuring out what I want to do or what I need to do and getting it done. I didn't realize how slow science is in. Science is slow.

[Becky Quick]

I don't know if it's the science as much as it is the. The structure for how it develops sometimes.

[Jeffrey Allen]

I agree. I. I think to try to get a therapy or treatment to Lucas requires first discovery it or uncovering it. Then it's getting it through regulatory.

[Becky Quick]

Yeah.

[Jeffrey Allen]

Then it's commercializing it. And so there's so many parties that have to be involved that require money and attention and focus, and it's easy to want to throw your hands up and go, it's not going to happen.

[Becky Quick]

Obviously, being on Mr. Beast got the word out. How does that exposure come back today? Where do you see it?

[Jeffrey Allen]

There's two ways. You know, I realized kind of winning Mr. Beast and winning Beast Games is like, okay, that's awesome. But, like, what am I going to do with it? And so for me, like, I wanted to show the world and show the rare disease community that I can. That I can elevate everybody. So after that, I went and rucked across the state of California. So I tried to raise awareness. I'm going to do it again. So season two of Ruck for Rare is coming this spring.

[Becky Quick]

What is rucking?

[Jeffrey Allen]

Rucking is kind of carrying weight on your back while you walk. So either do it with a vest or a backpack. It kind of. I think it stems from the ruck sack, like in the military. But. So last year I rucked across California. This year, we're going to do Ruck for Rare. It's called Ruck for Rare. And we're doing five marathons in five days. But we're carrying the weight of Lucas Hunter back. And it signifies the weight that not only Lucas carries every day with ctd, but the weight that families carry. And just our aim is to, you know, to elevate rare diseases, but also to raise money for research. And I did not expect it to be as fun as it was. So, I mean, last year we. We carried. You know, Lucas weighed 52 pounds at the time. We carried. We split it up between my friend and Jeremy and I. We rucked 365 miles in, like, less than three weeks. But we had a blast. We had a blast. And the outreach, we got from the community was amazing. From other rare diseases, other rare disease parents. So the aim here is just to elevate all rare diseases and show that, hey, we are carrying this weight for our families, but also for yours. And the ultimate aim is to have people get a rucksack on and even just if they walk a mile to be able to demonstrate that they're carrying the load with, with our families.

[Becky Quick]

That's a great image to have that. How much does he weigh this year?

[Jeffrey Allen]

I, I, I'm kind of nervous to weigh him, but I think it's going to be closer to 60.

[Becky Quick]

Just wait.

[Jeffrey Allen]

I know if I keep doing this every year, Haley weighs 80 pounds now. But even on the ruck and when I walk with Lucas at home, Luke's and I go on a lot of walks. He's got a big wagon. Kids stop me and kids say, are you, are you the Beast Games guy? And the, the primary question they ask is, how's, how's Lucas? Have you, have you found a cure? Which is so cute that they. Have you found a cure? Like, it's like hiding, you know, in a treasure chest somewhere. But they're truly interested. You know, it's not like their parents are there saying, hey, you should ask this. And I think that's probably one of the biggest surprises. I did not expect kids to be so interested in Lucas to be so interested or have that connection to kind of go, oh, this is a father trying to help his son. Is he doing better? And so, like, even when I look at my Instagram DMs or messages, Lucas's name is in probably a third of them. So it's not about Mr. Beast, it's not about me. It's about Lucas.

[Becky Quick]

I think that is something else that I would love to see, too. I would like other people to understand what kids like Lucas and Kaylie go through and to maybe see them and pay more attention and not be afraid of them. And I think what you've done has helped that tremendously.

[Jeffrey Allen]

Well, it's, and it's, I think I've just allowed the space for them to see, to see someone who's different on a, on a, on a different stage. And this is something, when I talk to kids often, I share. This is like there, there are kids in your network, at your school who are different. You know, whether they have a rare disease or not, whether there's special needs or not, connecting with them, seeing them for who they are matters. And not only matters to them, like it not only matters to Kaylee or Lucas, it matters to the person. Like, it changes you. When you're able to connect with someone who's different and truly care for them. It'll change you and change how you see stuff. I think ultimately for, like, for the world to care about rare diseases, people's hearts need to be changed. You know, we can't just have money be thrown into the problem. People have to connect to it, want to see it through. Because it's hard. We've talked about it. It is hard to try to find a therapy. So we need people who are truly invested in it. So, like, I think to be able to have kids connect with people who are different than them at an early age could shape the, the leaders of tomorrow in a different way. It's. I'm telling you, Jen's heard me say it all the time. Like, check out this dm. Can you believe they're asking about Lucas? It means so much to me to, to see that happen.

[Becky Quick]

Okay, so let's get back to what your hope is for Lucas.

[Jeffrey Allen]

Yeah, being Lucas's dad is interesting because I feel like I've had a toddler for eight years, and sometimes where I kind of like even speaking to you earlier, I realized, oh, he's gonna be nine this summer, but he still is a little bit of a toddler. And in a couple years, he'll be going through puberty and becoming a young man. And, you know, I know our family can handle whatever it brings, like, we're going to. But my hope for Lucas is that I know he came here for a purpose. I know he chose this life for a purpose, is that he continues to inspire others to allow his life to be a legacy and kind of go. I can inspire people to care about rare diseases. I can inspire researchers to try to find therapies not only for ctd, but for other conditions. Like when he, when, when he and I find each other's eyes and we connect, he looks at me and he's like, I'm okay. Like, I'm okay, dad. He's happy. He's in the present moment almost all the time. But I, I, when he, when he looks at me like that too, I know he's really. I feel he's saying to me, like, hey,

[Becky Quick]

do.

[Jeffrey Allen]

Help me do what I'm here to do. Because again, I, I, it took me a couple years, but I realized finding a therapy for Lucas is not just about Lucas. It's about Rohan, it's about Cadman, it's about Brody, it's about Devin and Xavier. It's These other kids with ctd. Then it's also about other rare diseases, because I, I can't imagine a world without. Where rare diseases, where people could be diagnosed at birth and get a treatment and have a. A life of their choosing. Like, I, I can. I can see it happening. And I think, like, that would be the legacy that, like Lucas, I imagine him at 50 and me in 85, and we're watching a show, and he has creatine to his brain, and, you know, he's not going to catch up right away, but he can communicate well, and he can look back and go, we did something special, dad. And again, it's all. It's all Lucas. It's all Lucas. He's just. He's a sweet boy. So that's, that's what I would hope for Lucas. And, but he. He needs help to have his legacy be fulfilled, too.

[Becky Quick]

I love that. I forget what else I'm supposed to ask.

[Jeffrey Allen]

What's your hope for Kaylee?

[Becky Quick]

You know, I hope we can do something for Kayla, too. Let her communicate better, because she communicates to me. I know everything she wants and everything she's thinking. I hope that she's able to be able to communicate as clearly to other people and to be able to find a purpose in life. And I think that's a big part of being happy in life. She's happy all the time. I want her to stay that way. I want her to be able to be more and more independent as we go along, and I want her to understand what she's building. I want the same thing you want for Lucas.

[Jeffrey Allen]

Yeah, we're. We're. We're. We're. We're doing it. Yeah. You know, and, and I, I, I, I know for a fact families 5, 10, 20 years from now are going to benefit from the work we're doing. And I think that's what I, I had to get out of my own way and make it bigger than l. For me to be sitting here right now like I, I had to. And it's not easy. It's. It's really hard to. To know that if we find a treatment for ctd, it probably isn't going to help Lucas as much as going to help a kid who's going to be born in the year 2030.

[Becky Quick]

Yeah, I think about that all the time, too. I hope it helps to some extent, but.

[Jeffrey Allen]

But we kind of have to do it.

[Becky Quick]

Yeah.

[Jeffrey Allen]

You know, and that's. That's the bittersweet truth of being a parent of a rare disease is a rare disease child is. We're going to find stuff for our children that's going to help for sure. Getting creatine to Lucas's brain is going to provide a market improvement, but their true beneficiaries are our families who haven't even started yet.

[Becky Quick]

That's what they say. You know, the tree that you find the shade under today was planted 50 years ago. Yeah.

[Jeffrey Allen]

Thank you so much.

[Becky Quick]

This one's the clean one. This is not. Come here, snotty.

[Jeffrey Allen]

Oh yeah. Appreciate you. Thank you for all the work.

[Narrator/Host (Becky Quick)]

This has been another step on the Path, a podcast and video cast series with CNBC Cures, where we are trying to build a community and make walking the path of rare disease families feel

[Becky Quick]

a little less lonely.

[Narrator/Host (Becky Quick)]

These episodes are available wherever you listen to podcasts and on YouTube. Subscribe there and leave a comment or two. Tell me what you think. Share your stories. We love hearing from you. You can also subscribe to the CNBC Cures newsletter for the latest news on rare disease advances, legislative changes or personal stories of patients and families. Next time we'll have an incredible story. K.J. muldoon, a child who was born with the Rare genetic condition CPS1 deficiency, who became the first person in the world to receive a permanent personalized CRISPR based gene editing therapy. And by the way, it all happened before he turned a year old.

[Becky Quick]

Hi, hi. Hi. Hi cutie.

[Jeffrey Allen]

Yay.

[Narrator/Host (Becky Quick)]

This brave little boy who is widely known as Baby KJ became a symbol of modern medicine after physicians at the Children's Hospital of Philadelphia and Penn Medicine developed the treatment that likely saved his life. I spoke to his parents.

[Becky Quick]

They wanted to initially start talking about comfort care, so end of life care. But I just don't think we were at a place at that point to make that decision so hastily without giving him the chance to fight to see what he could do.

[Narrator/Host (Becky Quick)]

Stay with us here on the Path. I want to thank all of my producers at CNBC and all of our listeners as well. And we'll see you soon.

[Schwab Representative]

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