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)
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.
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]
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]
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]
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]
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]
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]
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]
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]
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.
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.
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.
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.
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]
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]
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
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.
End of summary.