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CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Episodes
Tuesday Dec 10, 2024
Tuesday Dec 10, 2024
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.
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CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Tuesday Dec 03, 2024
Tuesday Dec 03, 2024
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.
Tuesday Dec 03, 2024
Tuesday Dec 03, 2024
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.
Tuesday Nov 26, 2024
Tuesday Nov 26, 2024
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.
Tuesday Nov 26, 2024
Tuesday Nov 26, 2024
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.
Wednesday Nov 20, 2024
Wednesday Nov 20, 2024
Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Wednesday Nov 20, 2024
Wednesday Nov 20, 2024
Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Wednesday Nov 13, 2024
Wednesday Nov 13, 2024
This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Wednesday Nov 13, 2024
Wednesday Nov 13, 2024
This podcast was recorded at CFRI’s 2024 CF Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease and its growing prevalence among those with CF, including risk factors, symptoms, and prevention.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Wednesday Oct 16, 2024
Wednesday Oct 16, 2024
Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.