The CFRI CF Community Voices Podcast

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.

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

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.

10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Video)

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.

10 Tips for Traveling with Disease & Illness by Full Time Traveler with CF, Caleigh Haber-Takayama (Audio)

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.

CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Video)

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.

CF and Cardiovascular Disease: Time to Listen to Your Heart! Alex Despotes, MD (Audio)

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.

Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Video)

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.

Therapeutic Strategies to Address Medical Trauma in the CF Community - Kate Yablonsky, LCSW (Audio)

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.

Panel: Advocacy, Access and Health Equity in Cystic Fibrosis (Video)

In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.