The CFRI CF Community Voices Podcast

Parenting with Cystic Fibrosis (Video)

Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

Parenting with Cystic Fibrosis (Audio)

Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

All Hands on Deck to Cure Cystic Fibrosis - Matthew Porteus, MD, PhD (Video)

Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test gene therapy approaches in CF patients. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

All Hands on Deck to Cure Cystic Fibrosis - Matthew Porteus, MD, PhD (Audio)

Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test gene therapy approaches in CF patients. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

From Defining Health Disparities to Improving Health Equity in CF - Susanna McColley, MD, FAAP, ATSF (Video)

Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

From Defining Health Disparities to Improving Health Equity in CF - Susanna McColley, MD, FAAP, ATSF (Audio)

Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.

CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.

DEI Mindfulness Panel (Video)

DEI Mindfulness Panel (Audio)

CF in Pakistan – A Doctor’s Crusade for Change - 3 of 3 (Video)

In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.

Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

CF in Pakistan – A Doctor’s Crusade for Change - 3 of 3 (Audio)

In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.

Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.