The CFRI CF Community Voices Podcast

Legacy Workshop: How to Conduct a Life Interview

Life interviews offer an opportunity for people to reflect on their lives and shape their stories, regardless of age or health. In this workshop, award-winning author Maryanne O’Hara (author of Little Matches) shares how to author one's own legacy or that of a loved one, while sharing practical tips on language and framing. Maryanne is a certified end-of-life-doula, whose work is inspired by the loss of her daughter to CF.

If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766​

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

Legacy Workshop: How to Conduct a Life Interview (Audio)

Life interviews offer an opportunity for people to reflect on their lives and shape their stories, regardless of age or health. In this workshop, award-winning author Maryanne O’Hara (author of Little Matches) shares how to author one's own legacy or that of a loved one, while sharing practical tips on language and framing. Maryanne is a certified end-of-life-doula, whose work is inspired by the loss of her daughter to CF.

If you listen to this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766​

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

Breath from Salt - Panel Discussion

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

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

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

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.

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.