The CFRI CF Community Voices Podcast

Advancing the GI Frontier for People with CF - Steven Freedman, MD, PhD (Audio)

Dr. Steven Freedman, Director of the Pancreas Center at Beth Israel Deaconess Medical Center, Chief of the Division of Translational Research, and Professor of Medicine at Harvard Medical School, highlights the multiple GI manifestations that accompany cystic fibrosis. The presentation also discusses current trials and efforts to create best practice guidelines for clinicians. 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.

Advances in Phage Therapy as a Treatment for Cystic Fibrosis - Benjamin Chan, PhD; Jon Koff, MD (Audio)

Dr. Benjamin Chan, an Associate Research Scientist in the Department of Ecology and Evolutionary Biology at Yale University, and Dr. Jon Koff, Director of the Adult Cystic Fibrosis Program at Yale University, give a comprehensive overview on recent progress in phage therapy as a treatment for CF, including the development of a clinical trial to investigate the safety and efficacy of a nebulized personalized phage therapy approach and the establishment of a Center for Bacteriophage Research and Therapy at Yale. 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.

Q&A on Reproductive Health with Raksha Jain, MD, MSc

Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, answers follow-up questions on her presentation "Reproductive Health in Men and Women with CF" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.

Reproductive Health in Men and Women with CF: What Do We Know... - Raksha Jain, MD, MSc

Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, highlights what is known and unknown about male and female infertility in CF, contraception and its impact on health in CF, as well as pregnancy, lactation and parenthood for men and women with CF. The presentation also discusses the impact of highly effective CFTR modulators. 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.

mRNA Therapy as a Treatment for CF - Deepika Polineni, MD, MPH

Dr. Deepika Polineni, Assistant Professor of Internal Medicine at the University of Kansas Health System and Associate Adult Program Director for the University of Kansas CF Care Center, provides a comprehensive review of mRNA as a novel therapeutic option for people with CF of all mutation types, and explains the difference between mRNA therapy and gene editing/ gene therapy. Results of the most recent clinical trials evaluating mRNA therapy in CF are also discussed. 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.

Three Perspectives, One Purpose: Why Medicine Needs Memoir - Diane Shader Smith; Maryanne O’Hara; David Weill MD

Diane Shader Smith, Maryanne O'Hara and David Weill, will speak for the patient, the parent, and the provider respectively, and address the importance of memoir in medicine in the context of cystic fibrosis. Using David’s memoir, Exhale: Hope Healing and a Life in Transplant, Maryanne’s memoir, Little Matches: A Memoir of Grief and Light, and Mallory Smith’s memoir, Salt in My Soul: An Unfinished Life, they will discuss the role of narrative in medicine as it relates to the parent-provider relationship, bioethical issues affecting both privileged and underserved communities, systemic failings, scientific inquiry, and the role of palliative care from the time of diagnosis until end of life. 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.

Getting to the After Times: CF and COVID in Year 2 - Richard Moss, MD

Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, gives an update on key aspects of the pandemic currently relevant to CF: vulnerability to COVID in the CF community, transmission, vaccine availability and safety, breakthrough infections, variants, special issues for the immunocompromised, and more. Dr. Moss reviews current evidence and recommendations, and gives a global outlook. 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.

Q&A on Reproductive Health with Raksha Jain, MD, MSc (audio)

Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, answers follow-up questions on her presentation "Reproductive Health in Men and Women with CF" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.

Reproductive Health in Men and Women with CF: What Do We Know... - Raksha Jain, MD, MSc (audio)

Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, highlights what is known and unknown about male and female infertility in CF, contraception and its impact on health in CF, as well as pregnancy, lactation and parenthood for men and women with CF. The presentation also discusses the impact of highly effective CFTR modulators. 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.

mRNA Therapy as a Treatment for CF - Deepika Polineni, MD, MPH (audio)

Dr. Deepika Polineni, Assistant Professor of Internal Medicine at the University of Kansas Health System and Associate Adult Program Director for the University of Kansas CF Care Center, provides a comprehensive review of mRNA as a novel therapeutic option for people with CF of all mutation types, and explains the difference between mRNA therapy and gene editing/ gene therapy. Results of the most recent clinical trials evaluating mRNA therapy in CF are also discussed. 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.