The CFRI CF Community Voices Podcast

CF impacts people of every race and ethnicity, including African Americans, yet due to the misperception that the disease impacts only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences, while Dr. Jennifer Taylor-Cousar updates us on the true diversity of our community.

CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.

Nicole Irizzary, DPT, presents on back pain and what to do about it with particular focus on the CF community. This webinar, recorded on September 11, 2021, is the first in a five-part interactive webinar series on various aspects of physical therapy. The session incorporates exercises, so get ready to move.  

CFRI's Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.

Nicole Irizzary, DPT, presents on back pain and what to do about it with particular focus on the CF community. This webinar, recorded on September 11, 2021, is the first in a five-part interactive webinar series on various aspects of physical therapy. The session incorporates exercises, so get ready to move.  

CFRI's Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.

Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, discusses his research to identify cell types that contribute CFTR expression and function along the proximal-distal axis of the normal human lung. The presentation describes the methods and results of his experiments as well as their potential impact on the development of precision medicine therapies for cystic fibrosis. 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. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, discusses his research to identify cell types that contribute CFTR expression and function along the proximal-distal axis of the normal human lung. The presentation describes the methods and results of his experiments as well as their potential impact on the development of precision medicine therapies for cystic fibrosis. 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.