The CFRI CF Community Voices Podcast

CF Airway Infections: To Treat or Not To Treat? Why and How? – Dao Nguyen, MD.CM, FRCP(C) (Audio)

Dr. Dao Nguyen, Associate Professor of Medicine at McGill, Clinician Scientist at the Research Institute of the McGill University Health Centre, Physician in the Division of Respirology at the McGill University Health Centre and Founding Director of the McGill Antimicrobial Resistance Centre, reviews the recent advances in our understanding, diagnosis and treatment of CF airway infections, as well as the challenges and remaining questions. Her presentation gives an overview on different microbes, particularly bacteria, ways to diagnose infection, and how to determine whether to treat and what kinds of treatments there are. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Partnership in CF Care: Complementary Therapies – Hanna Phan, PharmD, FCCP, FPPA

Dr. Hanna Phan, Clinical Associate Professor in the Department of Clinical Pharmacy at the University of Michigan, reviews some of the commonly used complementary and alternative therapy or medicines (CAM) for CF patients, CAM products’ safety and effectiveness data, considerations in evaluating and discussing available data of products, and recommended best practices of coproducing integrative care in CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Phage Therapy: A Panel Discussion with Phage Therapy Recipients and Clinician

Dr. Steffanie Strathdee’s presentation on phage therapy was followed by a panel discussion with two recipients of phage therapy – Ella Balasa, a young woman with CF, and Tom Patterson, PhD, Dr. Strathdee’s husband, – as well as Saima Aslam, MBBS, Professor of Medicine at the Division of Infectious Diseases and Global Public Health at UC San Diego and the Clinical Lead at the Center for Innovative Phage Applications and Therapeutics (IPATH). This panel was part of CFRI's Virtual 35th National CF Education Conference on July 29, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

The Story Behind the First Dedicated Phage Therapy Center in N. America - Steffanie Strathdee, PhD

Dr. Steffanie Strathdee, an infectious disease epidemiologist at the University of California San Diego and co-director of the Center for Innovative Phage Applications and Therapeutics (IPATH), shares how she and her colleagues, in 2016, revived a hundred-year-old forgotten cure – phage therapy - to save her husband’s life from a deadly superbug infection. The case led to a newfound interest in phage therapy, the launch of the Center for Innovative Phage Applications and Therapeutics (IPATH), and the publication of Dr. Strathdee's memoir she wrote with her husband, The Perfect Predator: A Scientist’s Race to Save her Husband from a Deadly Superbug. Dr. Strathdee also spoke about challenges and future prospects for phage therapy for CF patients. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 29, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Partnership in CF Care: Complementary Therapies – Hanna Phan, PharmD, FCCP, FPPA (Audio)

Dr. Hanna Phan, Clinical Associate Professor in the Department of Clinical Pharmacy at the University of Michigan, reviews some of the commonly used complementary and alternative therapy or medicines (CAM) for CF patients, CAM products’ safety and effectiveness data, considerations in evaluating and discussing available data of products, and recommended best practices of coproducing integrative care in CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Phage Therapy: A Panel Discussion with Phage Therapy Recipients and Clinician (Audio)

Dr. Steffanie Strathdee’s presentation on phage therapy was followed by a panel discussion with two recipients of phage therapy – Ella Balasa, a young woman with CF, and Tom Patterson, PhD, Dr. Strathdee’s husband, – as well as Saima Aslam, MBBS, Professor of Medicine at the Division of Infectious Diseases and Global Public Health at UC San Diego and the Clinical Lead at the Center for Innovative Phage Applications and Therapeutics (IPATH). This panel was part of CFRI's Virtual 35th National CF Education Conference on July 29, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

The Story Behind the First Dedicated Phage Therapy Center in N. America - Steffanie Strathdee, PhD (Audio)

Dr. Steffanie Strathdee, an infectious disease epidemiologist at the University of California San Diego and co-director of the Center for Innovative Phage Applications and Therapeutics (IPATH), shares how she and her colleagues, in 2016, revived a hundred-year-old forgotten cure – phage therapy - to save her husband’s life from a deadly superbug infection. The case led to a newfound interest in phage therapy, the launch of the Center for Innovative Phage Applications and Therapeutics (IPATH), and the publication of Dr. Strathdee's memoir she wrote with her husband, The Perfect Predator: A Scientist’s Race to Save her Husband from a Deadly Superbug. Dr. Strathdee also spoke about challenges and future prospects for phage therapy for CF patients. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 29, 2022.

CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.

Cystic Fibrosis and Inflammation - Levi Johnson, RDN

Levi Johnson, Registered Dietician, fierce bull rider, and individual living with CF, gives a general overview of what inflammation is and how living with CF causes chronic inflammation. Learn simple ways to combat chronic inflammation by making a few small adjustments in your daily routine. Even a small change can have a big impact.

If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY

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

Random Acts of Kindness - Julie Desch, MD

In this first of CFRI’s series on Random Acts of Kindness, hear Julie Desch, MD, tell how three random acts of kindness changed her life’s trajectory and helped to fulfill her life’s passion. Keep an eye out on our social media and this podcast series for more good news and random acts of kindness, and let us know if you have a story you’d like to share.

If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY

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

CF-Related Tattoos and the Stories Behind Them

Tattoos represent an array of meaning in our community, from honoring strengths and perspectives, special dates and people, and acceptance and loss along the CF journey. In our latest video podcast, individuals share the personal stories behind their tattoos.

If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY

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