The CFRI CF Community Voices Podcast

Breath from Salt - Panel Discussion (Audio)

Jeanie Hanley, MD, moderates a panel discussion on "Breath From Salt" by Bijal Trivedi. They are joined by Isabel Stenzel Byrnes, LCSW, MPH, Paul Quinton, PhD, and Jeffrey Wine, PhD, who provide personal and professional insights into life with CF and the history of the search for a CF cure. This panel was part of CFRI's Virtual 34th National CF Education Conference on July 30, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Breath from Salt - Bijal Trivedi, MSc, MA (Audio)

Bijal Trivedi, Senior Science Editor at the National Geographic and award-winning journalist specializing in narrative features about biology, medicine and health, talks about her book “Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever.†presents on strength training for individuals with CF and its role as foundational support for physical activity and fitness sustainability. She gives insight into her decade-long journey writing this book, some of the people who inspired her, and shares a few excerpts that were particularly moving to report. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 30, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

CF and Body Image - Panel Discussion (Audio)

Meg Dvorak, LCSW, moderates a panel discussion with CF adults on CF and Body Image. Georgia Brown, MLA, Danielle Mandella, and Dominic Quagliozzi, MFA, give personal insight into how CF is affecting their body image, including self-esteem and mental health, the impact of scars, and changes in appearance with Trikafta. This panel was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Strength-Building with CF - Taylor Lewis, MA, CSCS (Audio)

Taylor Lewis, Clinical Exercise Physiologist and Pulmonary Exercise Researcher, presents on strength training for individuals with CF and its role as foundational support for physical activity and fitness sustainability. He explains why paralleling strength training with conditioning-based training programs is key to improving and sustaining exercise capacity and functional fitness performance levels in CF. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Food Insecurity and CF: Challenges and Resources

It is estimated that over 25% of CF community members face food insecurity. In this webinar, recorded on Wednesday, September 1, a panel of personal and professional experts will discuss this issue, while sharing tips and resources for individuals facing this challenge. Hear from Georgia Brown, SNAP participant who lives with CF, Tiffany Raffino, LCSW, CF social worker at UCSF, and Katherine Jacobs, MPH, RDN, of the Food Research and Action Center for an engaging discussion, with Q and A from the audience.

Click here to view Tiffany Raffino's slides: https://www.cfri.org/wp-content/uploads/2021/09/Food-Security-Tiffany-Raffino.pdf

Click here to view Katherine Jacobs' slides: https://www.cfri.org/wp-content/uploads/2021/09/CFRI-Podcast_Food-Insecurity-Katherine-Jacobs.pdf

Click here to let us know what you think of this podcast:

https://www.surveymonkey.com/r/TMRP766

CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, and Viatris.

Food Insecurity and CF: Challenges and Resources (Audio)

It is estimated that over 25% of CF community members face food insecurity. In this webinar, recorded on Wednesday, September 1, a panel of personal and professional experts will discuss this issue, while sharing tips and resources for individuals facing this challenge. Hear from Georgia Brown, SNAP participant who lives with CF, Tiffany Raffino, LCSW, CF social worker at UCSF, and Katherine Jacobs, MPH, RDN, of the Food Research and Action Center for an engaging discussion, with Q and A from the audience.

Click here to view Tiffany Raffino's slides: https://www.cfri.org/wp-content/uploads/2021/09/Food-Security-Tiffany-Raffino.pdf

Click here to view Katherine Jacobs' slides: https://www.cfri.org/wp-content/uploads/2021/09/CFRI-Podcast_Food-Insecurity-Katherine-Jacobs.pdf

Click here to let us know what you think of this podcast:

https://www.surveymonkey.com/r/TMRP766

CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, and Viatris.

Q&A on CF and COVID-19 with Richard Moss, MD

Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, answers follow-up questions on his presentation "Getting to the After Times: CF and COVID in Year 2" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.

Q&A on CF and COVID-19 with Richard Moss, MD (Audio)

Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, answers follow-up questions on his presentation "Getting to the After Times: CF and COVID in Year 2" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.

Role of Disrupted Airway-Surface Liquid (ASL) pH Regulation in Small Airways in CF Lung Disease Pathogenesis - Xiaopeng Li, PhD

Dr. Xiaopeng Li, Associate Professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University, presents research on impaired mucociliary transport and a lower airway-surface liquid (ASL) pH in CF small airways, and potential novel therapeutic target for small airways diseases. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

A Multi-‘Omic Approach to Evaluate Concurrent Sinus and Pulmonary Disease in Cystic Fibrosis - Keehoon Lee, PhD

Dr. Keehoon Lee, a postdoctoral scholar at the Pathogen and Microbiome Institute at Northern Arizona University, presents research on the microbial composition of upper and lower CF airways in patients with chronic rhinosinusitis. He highlights the relationship between microbiome composition and host response, such as specific gene expressions and their functions in disease control. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.

CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.