The CFRI CF Community Voices Podcast

Health Insurance Options for the CF Community - Beth Sufian, JD

In this informative podcast, Beth Sufian, Director of the CF Legal Information Hotline and CF Social Security Project, discusses private insurance options, Medicaid and Medicare, and how to obtain coverage for the care you need.

NOTE: Beth recorded a podcast with CFRI last year specific to SSI/SSDI, which can be viewed at https://youtu.be/pXyeIhVa0G8

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, Chiesi USA, and Viatris, with additional support for this episode provided by Gilead Sciences.

Health Insurance Options for the CF Community - Beth Sufian, JD (Audio)

In this informative podcast, Beth Sufian, Director of the CF Legal Information Hotline and CF Social Security Project, discusses private insurance options, Medicaid and Medicare, and how to obtain coverage for the care you need.

NOTE: Beth recorded a podcast with CFRI last year specific to SSI/SSDI, which can be viewed at https://youtu.be/pXyeIhVa0G8

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, Chiesi USA, and Viatris, with additional support for this episode provided by Gilead Sciences.

Cystic Fibrosis in the African American Community

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.

Cystic Fibrosis in the African American Community (Audio)

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.

Hands-On Techniques for Back Pain

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.

Hands-On Techniques for Back Pain (Audio)

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.

Regional Regulation of CFTR and Ionocyte Expression in Airways - Kenichi Okuda, MD, PhD

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.

Regional Regulation of CFTR and Ionocyte Expression in Airways - Kenichi Okuda, MD, PhD (Audio)

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.

Pulmonary Exacerbations in the Era of Highly Effective CFTR Modulators - D.B. Sanders, MD, MS

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.

Personalized Phage-based Therapies - Forest Rohwer, PhD

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.