The CFRI CF Community Voices Podcast

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.

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

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.

Understanding CF & Men’s Sexual and Reproductive Health - Georgia Brown and Reuben Samuels (Video)

Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees. 

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