Our Fight to Breathe: A Cystic Fibrosis Podcast

In this powerful episode of Our Fight to Breathe, host Caleigh Haber sits down with her close friend Nick Di Brizzi Jr., a double lung and kidney transplant recipient who has turned his journey with cystic fibrosis into a mission of hope and service. Nick, an actor, athlete, and founder of the Breathe Like a Boss Foundation, shares nearly a decade of friendship and parallel recovery with Caleigh as they explore what it truly means to live—not just survive—with chronic illness.

This conversation offers rare insight into the realities of life before and after transplant, the challenges of managing complex medical needs, and the transformative power of community support. Nick and Caleigh discuss the daily heroism required to navigate chronic illness while maintaining hope, purpose, and connection to others who understand the fight.

Key topics covered:

• Daily management strategies for cystic fibrosis and post-transplant life
• The role of exercise, mindset, and community in long-term health outcomes
• Navigating the emotional and physical challenges of chronic illness
• Finding purpose and giving back through advocacy and nonprofit work
• The critical importance of organ donation awareness
• Building resilience through faith, family, and peer support

Whether you're living with chronic illness, supporting someone who is, or seeking to understand the patient experience, this episode offers valuable perspectives on resilience, community, and the power of turning personal struggles into sources of strength for others.

Medical disclaimer: This podcast is for informational purposes only and should not replace professional medical advice.

In this powerful episode of Our Fight to Breathe, host Caleigh Haber welcomes KC White, Chair of the Board of Trustees at the Cystic Fibrosis Foundation and a leading voice in the CF community. KC, who holds a Master's degree in Applied Positive Psychology from the University of Pennsylvania, brings over two decades of advocacy experience and deep expertise in mental health and chronic illness management.

This conversation explores the critical intersection of cystic fibrosis and mental health, offering evidence-based strategies for building resilience and finding hope amid life's challenges. KC shares insights from positive psychology research, explaining how scientific approaches to wellbeing can be practically applied to daily life with chronic illness.

Key Topics Covered:

• The science of hope and how it impacts both mental and physical health outcomes
• PERMA framework: Five building blocks of wellbeing (Positive emotions, Engagement, Relationships, Meaning, Accomplishment)
• Practical strategies for managing difficult days and building emotional resilience
• The "Three Blessings" exercise and other evidence-based interventions for cultivating gratitude
• How healthcare providers can better support patients' mental health needs
• Reframing techniques and the power of asking "what else is true?"

Whether you're living with CF, caring for someone with chronic illness, or working in healthcare, this episode offers valuable tools for enhancing mental wellbeing alongside medical care. KC's combination of lived experience and academic expertise provides both hope and practical guidance for anyone navigating health challenges.

This podcast is for informational purposes only and does not constitute medical advice. Always consult with your healthcare team regarding your specific situation.

In this episode, host Caleigh Haber interviews her personal CF physician, Dr. Patricia Eshaghian, Director of the Adult Cystic Fibrosis Program at UCLA Health.

Dr. Eshaghian shares her journey into CF care and explains why specialized, accredited CF centers are crucial for patient outcomes. With over 20 years of experience, she emphasizes how comprehensive, expert care has transformed CF treatment and significantly improved quality of life for patients.

Key topics include:

• Why CF Foundation-accredited care centers provide superior outcomes
• The comprehensive, multidisciplinary approach to CF care
• How individualized treatment plans address each patient's unique needs
• The revolutionary impact of CFTR modulators like Trikafta
• The importance of ongoing research for continued breakthroughs

Whether you're living with CF, caring for someone who is, or working in healthcare, this episode highlights why specialized expertise can be life-changing.

This podcast is for informational purposes only and should not replace professional medical advice.

Join host Caleigh Haber as she welcomes Ben Mudge, a fitness coach, cystic fibrosis advocate, and author of the upcoming book Fitness Without Limits. Born with CF and diagnosed at three days old, Ben has transformed his approach to health from a military-influenced upbringing into a thriving 13-year coaching career helping others embrace their potential.

This episode explores how reframing "fitness" as "health prioritization" can revolutionize your approach to wellness. Ben shares his philosophy that "imperfection will always perfect intention" and demonstrates how movement truly becomes medicine for those living with chronic illness. Together, Caleigh and Ben discuss the mental health benefits of physical wellness and the profound impact of feeling strong in a body that fights daily battles.

Key Topics Covered:

• Why posture is crucial for lung function and how simple habit changes can improve breathing
• Redefining fitness as holistic health - including mental wellness, nutrition, and movement
• The "if not, then what" mentality for adapting fitness routines during illness or recovery
• How physical strength impacts mental resilience and confidence in the CF community
• Practical nutrition strategies that avoid "food prison" mentality while supporting health goals
• The responsibility and connection that comes with sharing your chronic illness journey openly

Whether you're navigating your own health challenges, supporting someone with CF, or seeking sustainable approaches to wellness, this conversation offers actionable insights for building strength - both physical and mental. Ben's perspective on becoming the person others don't immediately identify as "the sick one" provides hope and practical strategies for anyone working to thrive alongside chronic illness.

Please note: This content is for educational purposes only and should not replace professional medical advice. Always consult with your healthcare team before making changes to your treatment or fitness routine.

In this powerful episode, we sit down with Caleb and Tiffany Remington (@ustheremingtons) to explore life beyond Trikafta, the groundbreaking CFTR modulator that has transformed the CF landscape for roughly 90% of patients. Caleb, who lives with cystic fibrosis, and Tiffany, his wife and caregiver, share their honest perspective on navigating this new chapter where survival has shifted to actually planning for the future.

This conversation goes beyond the medical breakthroughs to examine the complex emotional and psychological adjustments that come with life-changing treatment. We explore how couples navigate the transition from caregiver-heavy relationships to more balanced partnerships, and the unexpected challenges that arise when hope becomes reality.

Key Topics Covered:

• The physical and emotional experience of starting Trikafta
• How gene modulators change relationship dynamics between patients and caregivers
• Processing survivor's guilt while advocating for global access
• Relearning your body and identity after dramatic health improvements
• Planning for the future when it was never guaranteed before
• The responsibility of advocacy when you've benefited from breakthrough treatments

Whether you're living with CF, caring for someone who is, part of the broader chronic illness community, or working in healthcare, this episode offers valuable insights into resilience, hope, and the complex realities of medical breakthroughs. Join us for an honest exploration of what it means to move from surviving to truly living.

This podcast is for educational purposes only and should not replace professional medical advice.

In this powerful episode of Our Fight to Breathe, host Caleigh Haber sits down with Emily Kramer-Golinkoff, founder of Emily's Entourage and a nationally recognized advocate for cystic fibrosis research. Diagnosed with CF at six weeks old, Emily has transformed her personal journey into a global movement, building a groundbreaking nonprofit that accelerates research and drug development for people with rare nonsense mutations of cystic fibrosis.

This conversation explores the heart of advocacy - not just as awareness-raising, but as a lifeline for those navigating chronic illness. Emily shares insights on turning desperation into hope, the delicate balance between realistic expectations and maintaining faith in science, and how vulnerability becomes our greatest strength in creating change. Together, they discuss the complex emotions of being part of the population that doesn't benefit from breakthrough CF treatments, and how that experience fuels rather than defeats their mission.

Key topics covered:

• The evolution from grassroots advocacy to global nonprofit leadership
• Managing hope and reality when living with progressive disease
• Strategies for effective storytelling and community building
• The importance of clinical trial participation and patient empowerment
• Practical advice for turning advocacy into empowerment rather than exhaustion
• Building resilience and finding purpose amid health challenges

Whether you're living with CF, caring for someone with chronic illness, working in healthcare, or simply interested in patient advocacy, this episode offers valuable insights into the power of community-driven change and the strength found in shared struggle.

This podcast is for informational purposes only and should not replace professional medical advice.

In this deeply personal episode, host Caleigh Haber sits down with her husband Bryan Takayama to explore the often-overlooked perspective of CF caregivers. Bryan, an entrepreneur and co-founder of Notion State, shares his decade-long journey from meeting Caleigh one year post-transplant to becoming her primary caregiver through organ rejection, a second double lung transplant, and their current nomadic lifestyle across the globe.

This conversation offers rare insight into the emotional, logistical, and relationship dynamics that define the caregiver experience. Bryan and Caleigh discuss the evolution from partner to caregiver, the challenges of balancing work and care responsibilities, and the delicate art of fostering independence while providing essential support.

Key Topics Covered:

• Transitioning from romantic partner to primary caregiver role
• Navigating disagreements with other family caregivers during critical decisions
• Balancing full-time work while managing complex medical care
• Developing organizational systems for medications, appointments, and emergency preparedness
• Fostering patient independence and empowerment within the caregiver relationship
• Coping strategies including compartmentalization and emotional management

Whether you're a caregiver seeking validation and practical advice, a patient wanting to better understand your support system, or a healthcare professional working with families, this episode provides valuable perspectives on the realities of long-term caregiving in the chronic illness community.

This podcast is for informational purposes only and should not replace professional medical advice. Always consult with your healthcare team for medical decisions.

In this episode of Our Fight to Breathe Podcast, host Caleigh Haber Takayama sits down with Aaron Stocks, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program. Aaron brings a unique dual perspective—he both lives with cystic fibrosis and professionally helps others navigate the complex healthcare system. His journey from receiving an unexpected $700 medical bill that led to collections sparked his passion for healthcare advocacy and insurance literacy.

This conversation addresses one of the most critical yet overwhelming aspects of living with chronic illness: understanding and managing healthcare insurance. Aaron shares practical strategies for avoiding surprise medical bills, selecting appropriate insurance plans, and accessing essential specialized care. The discussion emphasizes the importance of preparation, understanding your specific healthcare needs, and knowing how to advocate effectively within the system.

Key topics covered:

• Essential preparation steps before choosing an insurance plan
• How to avoid unexpected medical bills and understand billing codes
• Strategies for ensuring your CF care team and medications are covered
• Resources available through the COMPASS program for personalized support
• State-based programs and financial assistance options
• The importance of building healthcare independence as a young adult

Whether you're transitioning to managing your own healthcare, helping a family member navigate insurance decisions, or simply trying to better understand the system, this episode provides actionable insights and resources. Aaron's personal experience combined with his professional expertise offers hope that with the right knowledge and support, healthcare navigation becomes more manageable.

This podcast provides educational information and should not replace professional medical or insurance advice.

In this deeply moving episode, host Caleigh Haber sits down with Diane Shader Smith, a powerful advocate in the cystic fibrosis community and author whose daughter Mallory lived with CF until age 25. Diane has channeled her grief into meaningful advocacy work, sharing Mallory's story through the acclaimed books "Salt in My Soul" and "The Diary of a Dying Girl," as well as a documentary that has reached audiences worldwide.

This conversation explores the complex journey of grief after losing a loved one to chronic illness, offering honest insights into how families navigate loss while keeping legacies alive. Diane shares how she's found purpose through advocacy work, particularly in raising awareness about antimicrobial resistance and phage therapy research, while maintaining space for both grief and joy in daily life.

Key Topics Covered:

• Navigating the early stages of grief and trauma after losing a child to CF
• Finding meaning and purpose through advocacy and storytelling
• Balancing grief with joy and living forward while honoring the past
• The power of community connection during loss and healing
• Practical ways to honor loved ones and keep their legacies alive
• Understanding phage therapy and its potential for CF treatment

Whether you're living with chronic illness, supporting someone who is, or working in healthcare, this episode offers profound insights into resilience, community, and the healing power of sharing our stories. Diane's journey reminds us that even in our deepest grief, we can find ways to create meaning and help others.

Medical disclaimer: This podcast is for educational purposes only and should not replace professional medical advice.

Episode Description:

In this powerful episode of Our Fight to Breathe, host Caleigh Haber sits down with Brandon Wright, a 37-year-old licensed social worker and certified dementia practitioner living with cystic fibrosis. Brandon shares his deeply personal journey of navigating identity at the intersection of chronic illness and being a member of the LGBTQIA+ community, offering insights that extend far beyond his individual experience.

Brandon's story illuminates the unique challenges faced by those living with multiple identities, particularly how the experience of "coming out" with CF prepared him for coming out as a gay man. Through honest conversation, he explores themes of acceptance, advocacy, and finding community in spaces where isolation often feels inevitable.

Key Topics Covered:

• The parallels between disclosing chronic illness and sexual identity
• Navigating healthcare systems as an LGBTQIA+ person with CF
• Building resilience through community connection and advocacy
• The importance of inclusive healthcare practices for diverse patient populations
• Practical strategies for finding support within both CF and LGBTQIA+ communities
• Creating safe spaces and fostering allyship in chronic illness communities

This episode offers valuable perspectives for anyone living with chronic illness, healthcare providers seeking to better serve diverse patients, family members and caregivers, and allies looking to create more inclusive spaces. Brandon's journey demonstrates the power of authentic storytelling and community connection in building resilience and finding joy amid life's challenges.

This podcast is for educational and support purposes. Always consult with healthcare professionals for medical advice.