The CFRI CF Community Voices Podcast

Dr. Amir Moheet, Associate Professor in the Division of Endocrinology, Diabetes and Metabolism at University of Minnesota, gives an overview of the current option for insulin pumps, continuous glucose monitoring (CGM) and hybrid closed loop insulin. He reviews existing literature on the use of these technologies and their potential benefits in the management of CFRD. 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.

Dr. D.B. Sanders, Associate Director of the CF Center at Riley Hospital for Children and an Associate Professor of Pediatrics at the Indiana University School of Medicine in Indianapolis, provides an overview of the benefits of CFTR modulators with respects to the frequency of pulmonary exacerbations and how the CF community is preparing to treat respiratory symptoms in this new era. 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.

Dr. Forest Rohwer, a microbial ecologist and Professor of Biology at San Diego State University, discusses current research on traditional phage therapy as well as modified phage called tailocins, to create personalized treatments for CF lung infections. The presentation describes laboratory protocols for isolating and purifying these biologicals, as well as the progress in regulatory and clinical treatment protocols. 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.

 

 

Gunnar Esiason describes his journey with cystic fibrosis from childhood to a newly minted M.B.A. After being near end-stage ilness in 2018, Gunnar enrolled in a pivotal clinical trial that saved his life. Gunnar’s eyes have turned to the future of CF, where the next generation of patients will not have to grow up with the same disruptions as Gunnar and patients in his generation. 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.

Dr. Angela Garinis, Assistant Professor at the Oregon Hearing Research Center at Oregon Health & Science University, and Dr. Ahmet Uluer, Director of the Adult Cystic Fibrosis Program at the combined Boston Children’s Hospital and Brigham & Women’s Hospital Adult Cystic Fibrosis Center, discuss the pathogenesis of CF with focus on the microbiome and use of ototoxic treatments; synergistic ototoxic effects (e.g., noise, inflammation, other treatments) and ototoxicity monitoring and management options for CF care centers. They also briefly discuss novel clinical ototherapeutic trials. 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.

At CFRI's virtual Conference Awards Celebration on July 31, 2021, we honored these extraordinary individuals: Jonathan Widdicombe, PhD - Paul M. Quinton Cystic Fibrosis Research Legacy Award; Jacob Fraker, MSW - CFRI Partners in Living Award In Memory of Anabel Stenzel; Marina Gonzales – Dave Stuckert Memorial Volunteer of the Year Award; Yelizaveta Sher, MD, FACLP - Professional of the Year Award.

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

Dr. Amir Moheet, Associate Professor in the Division of Endocrinology, Diabetes and Metabolism at University of Minnesota, gives an overview of the current option for insulin pumps, continuous glucose monitoring (CGM) and hybrid closed loop insulin. He reviews existing literature on the use of these technologies and their potential benefits in the management of CFRD. 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.

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.

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.

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.