The CFRI CF Community Voices Podcast

Book Reading: Love, Courage and Miracles - Robin Modlin, MA (Audio)

Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Video)

Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Culture Shift: CF Lung Infections in the Modulator Era - Lucas Hoffman, MD, PhD (Audio)

Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Video)

Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Phage Therapy for CF-Associated Infections - Benjamin Chan, PhD (Audio)

Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Panel: Coping with Cancer and CF (Video)

In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Panel: Coping with Cancer and CF (Audio)

In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Strategies to Address Medical Trauma - Samantha Johnson, MA, CCLS; Kate Yablonsky, LCSW (Video)

Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Strategies to Address Medical Trauma - Samantha Johnson, MA, CCLS; Kate Yablonsky, LCSW (Audio)

Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.

Aging in the New Age of Cystic Fibrosis - Richard Moss, MD (Video)

Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic efforts to raise expertise of caregivers for aging CF patients as well as providing accurate information and empowerment to all people with CF everywhere. This presentation was part of CFRI's 37th National CF Education Conference.

CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.