The CFRI CF Community Voices Podcast

Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Video)

In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

Modulators, Pregnancy, & The Power of Advocacy Through It All - Crystal Boeckel (Audio)

In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.

Funding for CF Community Voices 2025 has been provided to date by Viatris.

Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Video)

Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Matt De Fina's CF Journey: From Double Lung Transplant to Napa Valley Winemaker (Audio)

Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Video)

In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Pancreatic Disease and CFRT Modulators: Dr. Katie Larson Ode (Audio)

In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Advancing Advocacy and Awareness - CFRI Advocacy Film 2024

In less than three minutes, viewers will learn about cystic fibrosis (CF), the need for continued research to find a cure, the diversity of our community, and the many programs and services CFRI offers to the CF community. Please share with your networks to expand the impact of this film. Awareness is key to connect our community members to needed resources, while inspiring others to advocate for increased research funding and access to therapies.

Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Video)

In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Updates in Constipation Management for CF: Lauren Kormelink, PharmD, BCACP (Audio)

In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.

Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.

Renal Challenges in Aging with Cystic Fibrosis: Alexandra “Xan” C.H. Nowakowski, PhD, MPH (Video)

In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF).Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat. 

CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.