Breathless

In the Season 2 finale of Breathless, host Jeremie Saunders tackles the ultimate question facing the Cystic Fibrosis (CF) community: Are we finally on the verge of a true cure? Growing up sick, Jeremie developed a psychological "immunity" to the repetitive promise that a cure was "just around the corner." But today, the conversation is fundamentally different.

This episode takes us out of the pharmacy and directly into the laboratories where researchers are transitioning from small-molecule symptom management to structural gene editing. Featuring Dr. Bowen Li (University of Toronto), Dr. Paul Eckford (Chief Scientific Officer, CF Canada), and Kelly Grover (CEO, CF Canada), we pull back the curtain on the grueling reality of scientific research—described as "pushing a boulder up a hill with chopsticks." We explore how the global proof of concept from COVID-19 mRNA vaccines has turbocharged CF research, how CRISPR molecular scissors are being engineered to permanently rewrite genetic typos, and how Machine Learning is drastically accelerating the timeline to reach the final 10% of the community.

• The Practiced Optimism: Jeremie details the emotional exhaustion of childhood hope cycles, where promised breakthroughs consistently failed to materialize, leading to a defensive "self-preservation" mindset in his twenties.
• A New Vocabulary: Why current scientific progress is materially different. For the first time, data-driven researchers are using definitive terms like functional cure, mutation-agnostic, and restoring normal function at the source.

• Chopsticking the Boulder: Dr. Bowen Li describes the quiet, unglamorous reality of the lab at 8:00 PM on a Tuesday, where progress is measured in microscopic, hard-won inches.
• The Lazarus Effect vs. The Temped Joy: CEO Kelly Grover recalls an early advocacy trip to Ottawa with a profoundly ill young man, contrasting his miraculous post-Trikafta transformation with the sobering reality of meeting patients who remain devastatingly sick.

• The Broken Text: While Trikafta acts as a structural prop for a wobbly, misfolded protein, it is entirely useless for patients with "nonsense mutations."
• The Cellular Stop Sign: Dr. Bowen Li explains that in these rare variations (such as the W57X mutation discussed in previous episodes), the cell hits a premature stop sign in the middle of reading the genetic sentence. The protein is cut off too early and never forms, leaving nothing for modulator drugs to attach to.

• The Vault Analogy: Dr. Li frames human genetics simply: DNA is the master cookbook safely locked inside the nucleus vault. You cannot remove the book, but you can create a temporary photocopy of a single page to take to the kitchen. That photocopy is mRNA.
• The Platform Revolution: A historical look at mRNA, from its discovery by Brenner and Crick in the 1960s to Katalin Karikó’s underfunded, decades-long battle to chemically stabilize the molecule. The global deployment of COVID-19 vaccines served as the ultimate medical proof of concept, opening the floodgates for respiratory disease mapping.
• The Lipid Nanoparticle Trojan Horse: To get delicate mRNA past the lung's natural "bouncers" (mucus and cilia), scientists wrap it in a micro-engineered fat bubble designed to slide through sticky blockages and hit targeted cells.
• CRISPR Molecular Scissors: Moving beyond temporary photocopies, CRISPR edits the master cookbook itself. Hijacked from a bacterial immune defense system discovered in yogurt cultures, Jennifer Doudna and Emmanuelle Charpentier engineered the Cas9 protein to act as scissors guided by genetic GPS. Modern iterations—like base editing and prime editing—can cleanly correct a single letter in the double helix without fracturing the strand.

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What happens when the parade moves on, but you're still standing on the sidewalk? In this heavy and deeply candid episode of Breathless, host Jeremie Saunders addresses the modern paradox of the "Trikafta Revolution." While a miraculous 90% of the Cystic Fibrosis community is experiencing a historical second chance at life, a remaining 10% is left stranded in the old world.

We follow the story of Teresa Weger, a 20-year-old university student from Weyburn, Saskatchewan. Teresa possesses an ultra-rare, spontaneous genetic mutation that places her entirely outside the reach of current modulator drugs. Jeremie pairs Teresa's current physical decline with his own history of severe CF complications, confronting the painful reality of survivor's guilt. This episode pulls back the curtain on the emotional isolation of being left behind by your own community, while exploring the cutting-edge genetics and future technologies—like mRNA and CRISPR—needed to finish the fight for everyone.

• The Shrinking Base: Teresa Weger notes a drastic shift in the CF community. As health dramatically improves for the majority, community enthusiasm and attendance at advocacy events (like local walks) have noticeably waned.
• Tempered Joy: CF Canada CEO Kelly Grover notes that while reaching "first base" is a biological triumph, the organization's celebrations must remain tempered until therapeutic options exist for 100% of patients.

• The "Toyota Camry" vs. The Custom Model: The vast majority of CF patients carry the common Delta F508 mutation. Teresa's mutation is an ultra-rare, complex anomaly: W57X/exon 23-24 deletion.
• The Biological Glitch: Chief Scientific Officer Dr. Paul Eckford explains a rare break from the classic inheritance model. While Teresa's mother is a standard carrier, her father is not. Teresa’s CF was caused by a completely spontaneous, random genetic mutation during DNA replication at the exact moment of conception.

• The Linear Decline: After maintaining a stable childhood with a lung function of 97%, Teresa experienced a sudden adolescent crash, with her lung capacity dropping into the 50s.
• The Multi-Front War: A graphic look at severe CF symptoms outside the lungs, highlighting Teresa’s struggles with chronic gastrointestinal blockages and painful sinus surgeries that result in post-sedation complications.

• The Regina CF Walk: Teresa recalls the painful emotional whiplash of standing backstage at a fundraising walk. Ahead of her, a Trikafta-responsive speaker joyfully proclaimed that her sweat chloride levels had normalized to healthy standards—leaving Teresa to follow with a speech detailing her rapid physical decline.
• Parallel Tracks, Forked Roads: Jeremie recognizes his own past medical trauma in Teresa’s current daily fight—specifically their shared history of aggressive sinus polyps and major large intestine resections 75% of Jeremie's large bowel was removed). He struggles to navigate the raw survivor's guilt of receiving a "golden ticket" while others remain waiting.

• "The experience of feeling like you're on the same team but no longer working for the same goal... we all still have CF, but they don't still have the same CF as me." — Teresa Weger
• "It's like winning the lottery, only the prize is a life-limiting genetic disease that no pharmaceutical company has built a drug for because you might be the only person on earth with your specific genetic code." — Host (Jeremie)
• "I am the one who got to keep living. And she is the one who is still waiting." — Host (Jeremie)
• "We aren't done. And we won't be done until the bus stops for everyone." — Host (Jeremie)

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For parents, caregivers, and anyone living close to cystic fibrosis, this episode asks a painful, hopeful question: what does a CF diagnosis mean for a child born today?

Jeremie Saunders follows two families separated by a generation of science. One entered the world of CF before modulators, when a diagnosis landed like grief and the future felt brutally narrow. The other is raising a child diagnosed through newborn screening in the age of Trikafta, where the prognosis conversation has changed—but fear hasn’t disappeared.

Along the way, we trace the sweat test, newborn screening, pediatric CF care, and the strange emotional terrain of parenting in an era of real medical progress. You’ll hear how Trikafta is reshaping childhood, what still keeps parents up at night, and why hope in cystic fibrosis is wider now—but not yet complete.

This is an episode about the next generation of CF: born into more possibility, still living with uncertainty.

• A Strange Year for Hope: Jeremie reflects on his own diagnosis in 1989—the same year scientists discovered the CFTR gene, sparking a wave of hope that evaporated when an immediate cure failed to materialize.
• Asthma or Something Sinister?: Ross Drake recalls the exhausting years spent treating his youngest son, Ryan, for what they thought was asthma, only to watch him cough until he threw up phlegm every night.
• The Elevator Ride: Ross shares the heartbreaking moment he received the call confirming his second son, Stephen, also had CF, and having to leave work to tell his wife.

• Quantitative Pilocarpine Iontophoresis: A deep dive into the classic CF "sweat test." The CFTR protein acts as a cellular gatekeeper; when it fails, chloride cannot re-enter the cells, making CF children famously "salty to the taste."
• The Gray Zone: Understanding the diagnostic numbers: under 30 is clear, 30 to 59 is a medical "maybe," and 60 or higher is the definitive threshold where a family's planned future disappears.
• The Battle for Newborn Screening: How Cystic Fibrosis Canada fought a province-by-province bureaucratic war to mandate infant screening, allowing babies like Miles to be flagged and treated weeks after birth rather than years.

• Diagnosis as Loss vs. Diagnosis Tinted with Hope: While Ross’s generation faced a relentless schedule of prevention and a median life expectancy of just 37 years, Brittany was told that while the diagnosis was unfortunate, Miles "couldn't have been born at a better time."
• Trikafta as a Childhood Landscape: For the new generation, CFTR modulators aren't a mid-life rescue mission; they are the baseline. The drug targets the underlying protein defect, moving the line from symptom management to true physical transformation.

• Blowing the Medical Mind: Brittany shares a stunning clinical update: because Miles started Trikafta at such a young stage, his pancreas has recovered enough that he has been completely taken off pancreatic enzymes.
• Preserving the Organ: The medical frontier explores how introducing modulators to infants might prevent chronic organ damage before it ever starts.

• "Parenting with CF meant building your life around prevention, because medicine couldn't yet offer transformation." — Host (Jeremie)
• "I got to go home now and tell my wife, my other son has CF." — Ross Drake
• "As unfortunate as it is that he has been diagnosed with CF, he couldn't have been born at a better time." — Brittany Hollowink
• "And this has just been within the last three months we've been able to completely take him off his pancreatic enzymes... He's been doing just fine and it's blowing my mind." — Brittany Hollowink

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In this powerful episode of Breathless, we explore the boundary between physical restriction and newfound freedom. For decades, Cystic Fibrosis (CF) was a disease defined by limits: the limit of a breath, the limit of a career, and the limit of a lifespan.

Today, those limits are being shattered. We follow two extraordinary journeys: Jeremy Vosburgh, a homicide detective who defied medical expectations to serve on the front lines of law enforcement, and Lauren Clift, a musical theater performer who transitioned from "choreographing her coughs" to taking her first full, effortless breath. This episode examines the "CF Without Limits" philosophy—a shift from merely surviving to actively planning for a future that was never guaranteed.

• The Hidden Struggle: Lauren Clift describes the grueling reality of performing in Legally Blonde while her lung function declined, forcing her to hide violent coughing fits behind stage choreography.
• The "Cough Blackout": A reflection on the magic of the stage and how, for years, the adrenaline of performance was the only thing that could temporarily silence the symptoms of CF.

• Defying the System: Jeremy Vosburgh shares how he bypassed the "rules" of CF to become a police officer, proving his capability through a high-intensity fitness test.
• Pepper Spray & Resilience: The incredible irony of a man with a respiratory disease voluntarily undergoing pepper spray training and physical altercations to protect his community.
• The 4 AM Discipline: A look at the brutal "old-school" grit required to balance nebs, neubulizers, and a demanding career before modern medicine arrived.

• The Trikafta Blackout: While 90% of the CF community celebrated a miracle drug, Lauren was part of the 10% with rare mutations who were "left behind."
• Genetic Typos: CF Canada’s Chief Scientific Officer, Paul Eckford, explains why certain genetic codes don't respond to standard treatments and the isolation that causes for patients.
• The Wall of Advocacy: How Lauren’s mother—a pharmacist—had to beg politicians for the very drug she dispensed to others while watching her own daughter fade.

• The Miracle Arrives: The bureaucratic and emotional hurdle of finally accessing Trikafta for rare mutations in July 2024.
• A Full Breath: Lauren describes the profound, tearful moment of rolling over in bed and taking a deep breath without coughing for the first time in years.

• Planning to be an Old Man: Jeremy reflects on how his goals have shifted from "getting by" to the simple, once-impossible dream of growing old.
• Beyond the Lungs: CEO Kelly Grover discusses how CF Canada is pivoting to support "best lives"—focusing on fertility, education, and retirement planning.
• The Weight of the Future: Addressing the survivor's guilt and the mental health challenge of re-entering a world you thought you were leaving.

• "I would literally have to choreograph into my dance routine where I could cough without the audience hearing... otherwise I wouldn't make it through the show." — Lauren Clift
• "I don't like being told that it's impossible. I don't mind being told that it might be hard... but I would say that that's [nonsense] and that you can do it." — Jeremy Vosburgh
• "I dispense this drug to other CF patients that I see getting better. And I am watching my daughter die." — Lauren’s Mother
• "Relief is the biggest thing... but also relief in just breathing. It's really cool to just breathe. I don't know if people know that." — Lauren Clift

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What happens when a miracle drug gives you back your future, but your mind is still built for a shorter life?

In this moving episode of Breathless, host Jeremie and guests dive into the "mental health fallout" of growing up with Cystic Fibrosis. For decades, the CF community focused on one goal: survival. But with the arrival of Trikafta, many are facing a new, unexpected existential crisis. We explore the architecture of growing up sick, the trauma of living with an "expiration date," and the difficult reckoning that occurs when the horizon of your life suddenly shifts from years to decades.

Featuring clinical psychologist Dr. Jodi Carrington, CF advocate Lauren Clift, and CF Canada CEO Kelly Grover, this episode pulls back the curtain on the psychological complexity of being "saved" and the urgent need to invest in the mind with the same intensity we’ve invested in the lungs.

• The Parental Mask: Jeremie reflects on his parents’ stoicism and the realization that their strength often involved "shattering" out of his sight.
• "What Happened Here?" vs. "What’s Wrong Here?": Dr. Jodi Carrington explains how reframing the conversation from pathology to experience creates the empathy necessary for healing.
• The Inside of Trauma: Why trauma isn't defined by the diagnosis itself, but by how the story unfolds within the family and community.

• The Body Keeps Score: Lauren Clift shares her journey of middle-school anxiety attacks and the subconscious ways she absorbed the fragility of her life.
• Financial & Life Planning: Jeremie discusses the "freedom" of having no foundation—spending every dollar and avoiding long-term plans because tomorrow wasn't guaranteed.
• The Identity Crisis: What happens when the "honeymoon phase" of a new drug ends and you realize your entire identity was built around dying young?

• Survivor's Guilt: Addressing the "cruel math" where 90% of the community benefits from Trikafta while 10% are left waiting, and the heavy emotional weight carried by those who received the miracle.
• The Hospital Visit Realization: Jeremie recounts the moment a nurse suggested a psychologist and a friend’s simple acknowledgment—"That must be really hard"—broke the emotional floodgates.

• CF Canada’s Mental Health Focus: Kelly Grover discusses Peer Connect, a pilot program designed to help patients, dads, and caregivers "say the unsayable" together.
• The Optimal Human Operating System: Dr. Carrington outlines the four pillars needed for post-traumatic growth: Attachment, Regulation, Community, and Role/Purpose.

• "When a miracle drug gives you back your future, you still have to figure out what to do with a mind that was built for a much shorter life." — Host

• "Trauma has nothing to do with what happened to you. It's all about what happens inside of you." — Dr. Jodi Carrington

• "The scary part isn't thinking about me dying. The scary part is that other people think I'm dying. I'm trying to process the feelings of... I could have died." — Lauren Clift

• "We have invested billions of dollars into the biology... but the mind? The mind is still catching up. If we don't invest in that frontier... we will lose people not to their lungs, but to their loneliness." — Host

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The Season 2 premiere of Breathless explores a biological and existential revolution. For decades, Cystic Fibrosis was defined by a "physical perimeter"—a list of things that were simply impossible. But with the advent of transformative drugs like Trikafta, those walls are vanishing.

Host Jeremie opens with a visceral comparison between a 2017 spiritual "holotropic breathing" experience and the 2021 pharmaceutical miracle of his first dose of Trikafta. We then hear from elite athletes who shattered expectations long before the "miracle drug" existed, and we look at how Cystic Fibrosis Canada is pivoting its entire mission from "extending life" to supporting a life "without limits."

• Salt Spring Island (2017): Jeremie describes a profound meditative state where, for a moment, the "heavy, wet coat" of CF was stripped away.
• The Blue Pill (2021): The "impossible milestone" found in a blister pack. Jeremie recounts the first morning he woke up without the "wet rattle" in his lungs, realizing his biology had been rewritten.

• The Broken Valve: Dr. Paul Eckford (Chief Scientific Officer, CF Canada) explains the CFTR protein.
• Chloride, Salt, and Water: A breakdown of why CF lungs create "concrete" mucus and how new modulators open the cellular gates to let water flow, clearing the airways.

• The Undiagnosed Athlete: Lisa won 11 Ironman championships despite having CF, including a period where she didn't even know she had the disease.
• The "Superpower": How meeting children with CF gave Lisa a purpose beyond winning, leading to her "lights out" fourth-place finish at the Hawaii Ironman World Championships while battling a chest infection.

• The Two-Year Warning: At 19, Sophie was told she had two years to live. Her response? A bucket list that started with summiting Mount Kilimanjaro with 50% lung function.
• 36 Marathons in 36 Days: Sophie’s journey from a nationally ranked sprinter to an ultra-endurance icon, and her shock at how "easy" running became after Trikafta boosted her lung function to 110%.

• From Pediatric to Geriatric: Kelly Grover (CEO, CF Canada) discusses the challenge of pivoting a non-profit toward supporting adult needs like housing, nutrition, and retirement.
• The Paradox of Progress: Why mental health challenges (anxiety and depression) are intensifying even as physical health improves. Jeremie describes the "existential whiplash" of having to plan for a future he never expected to have.

• "Trikafta didn't just open my airways; it dismantled the perimeter. The walls I spent thirty years banging against have simply… vanished." — Host
• "I am going to be the best sick person on that start line. And what I might lack in lung health, I'm going to make up for in heart." — Lisa Bentley
• "I didn't even realize I was struggling my whole life because I didn't have the opportunity to actually feel what it's like to actually breathe properly." — Sophie Grace Holmes
• "I might have a bit of a freakout if all of a sudden the world was my oyster with no restrictions on it." — Kelly Grover

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How did we turn a disease that would kill you before your 5th birthday into one that may never kill you at all? Easy: Decades of tireless, constant and relentless advocacy by parents who refuse to accept a horrible fate for their children. In the season finale of Breathless, we hear from two of the most influential people in Cystic Fibrosis history and learn how a refusal to give up in the 1950s led us down a path to revolutionary treatment, and a fight for a cure that continues today.

Breathless is a Snack Labs Production in partnership with Cystic Fibrosis Canada

Host: Jeremie Saunders

Producer: Jeremie Saunders, Taylor MacGillivary

Editor: Jeremie Saunders, Taylor MacGillivary

Sound Design: Donovan Morgan

Music: Tom Fox, Donovan Morgan

Artwork/Design: Brian Stever

For more information on Cystic Fibrosis:

https://www.cysticfibrosis.ca/

Want more Snacks for your ears?

https://www.wearesnack.io/

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When Jeremie was young, he was hard on his parents. Now, he understands their perspective, recognizing that they were new parents, doing the best they could do all while grappling with the devastating news that their son likely will not live to see university. In episode 5 of Breathless, we delve into the experiences of parents with children who have Cystic Fibrosis, exploring how they navigate the emotional maze of raising a child they may outlive.

Breathless is a Snack Labs Production in partnership with Cystic Fibrosis Canada

Host: Jeremie Saunders

Producer: Jeremie Saunders, Taylor MacGillivary

Editor: Jeremie Saunders, Taylor MacGillivary

Sound Design: Donovan Morgan

Music: Tom Fox, Donovan Morgan

Artwork/Design: Brian Stever

For more information on Cystic Fibrosis:

https://www.cysticfibrosis.ca/

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Jeremie always knew how he felt about having kids, and then everything changed. In episode 4 of Breathless, we dig into the nuanced considerations of starting a family when you have a life-shortening condition that could be inherited by your children. In the face of Trikafta, Jeremie faces the difficult task of reevaluating a choice he once felt absolutely certain about.

Breathless is a Snack Labs Production in partnership with Cystic Fibrosis Canada

Host: Jeremie Saunders

Producer: Jeremie Saunders, Taylor MacGillivary

Editor: Jeremie Saunders, Taylor MacGillivary

Sound Design: Donovan Morgan

Music: Tom Fox, Donovan Morgan

Artwork/Design: Brian Stever

For more information on Cystic Fibrosis:

https://www.cysticfibrosis.ca/

Want more Snacks for your ears?

https://www.wearesnack.io/

Hosted on Acast. See acast.com/privacy for more information.

When you think you'll die young, you look at relationships with a unique perspective. In this episode of Breathless, we'll take a look at Jeremie's thoughts on dating and marriage. He speaks with others with CF to understand more about the diverse outlooks on intimate relationships when living with a fatal genetic disease.

Breathless is a Snack Labs Production in partnership with Cystic Fibrosis Canada

Host: Jeremie Saunders

Producer: Jeremie Saunders, Taylor MacGillivary

Editor: Jeremie Saunders, Taylor MacGillivary

Sound Design: Donovan Morgan

Music: Tom Fox, Donovan Morgan

Artwork/Design: Brian Stever

For more information on Cystic Fibrosis:

https://www.cysticfibrosis.ca/

Want more Snacks for your ears?

https://www.wearesnack.io/

Hosted on Acast. See acast.com/privacy for more information.