Advocacy in Action
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.
Creators and Guests
Host
Caleigh Haber-Takayama
I'm Caleigh Haber, a cystic fibrosis warrior, two-time double lung transplant recipient, and passionate advocate for the chronic illness community. Born with CF, I've navigated countless surgeries and medical challenges while choosing to live each day to the fullest in honor of my donors and with deep gratitude for my supportive community. Through Fight2Breathe and my podcast "Our Fight to Breathe," I advocate for the cystic fibrosis, organ transplant, and rare disease communities, working to raise awareness and inspire others to thrive despite their challenges.
Guest
Emily Kramer-Golinkoff
Emily Kramer-Golinkoff is a nationally recognized advocate, speaker, and thought leader in the cystic fibrosis community. Diagnosed with CF at just six weeks old, she is the founder of Emily’s Entourage, a groundbreaking nonprofit accelerating research and drug development for people with rare nonsense mutations of CF. Emily has transformed her personal journey into a global movement, raising millions for research and building partnerships across the scientific community. Her work demonstrates the transformative impact of advocacy, community building, and unyielding hope. Emily’s story is a testament to what is possible when passion and purpose unite for change.