The CFRI CF Community Voices Podcast

Embracing the Future: Aging with CF - Ahmet Uluer, DO, MPH; CF and Colon Cancer: My Lived Experience - Anna Payne

Dr. Ahmet Uluer, a medicine and pediatric trained pulmonologist and Director of the Adult Cystic Fibrosis Program at the combined Boston Children’s Hospital and Brigham & Women’s Hospital Adult Cystic Fibrosis Center, gives an overview of the impact of and risk associated with aging for people with CF, including GI cancers, complications associated with diabetes, hypertension, bone disease, hearing loss, kidney disease, cardiovascular disease, among others.

Anna Payne, a 36 year-old woman living with CF and colon cancer, shares the real-life impact that colon cancer has on people and what it is like to live with two diseases. Diagnosed at 34 - well before the recommended screening age of 40 – she is now seeking to educate others about the elevated risk that CF patients and carriers have of developing colon cancer. This joint presentation was part of CFRI's 36th National CF Education Conference.

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

Panel: Parenting with CF - Lucy Barnes; Matthew DeFina; Carl Robinson; moderated by Mary Helmers, RN

Lucy Barnes, Matthew DeFina, and Carl Robinson, three adults with CF who are also parents, share their individual paths to parenthood. Moderated by Mary Helmers, the discussion explores panelists’ experiences with reproductive health discussions with their CF care providers; their partners’ key roles; finding balance with parenting, working and managing CF; the impact of pregnancy and/or parenthood upon health maintenance; and addressing psychosocial care needs. This presentation was part of CFRI's 36th National CF Education Conference.

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

Advances in mRNA Therapy: New Applications for Cystic Fibrosis - Deepika Polineni, MD, MPH

Dr. Deepika Polineni, Cystic Fibrosis Center Director and Associate Professor in the Department of Pediatrics, Division of Allergy and Pulmonary Medicine at Washington University in St. Louis, provides a comprehensive overview of messenger ribonucleic acid (mRNA) therapy as a novel therapeutic option for CF. She discusses early studies of safety and tolerability in people with CF, as well as the potential of mRNA therapy to improve lung disease for people with CF irrespective of their CFTR genotype. This presentation was part of CFRI's 36th National CF Education Conference.

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

Inside The Art Of Dominic Quagliozzi - Part 2 (Video)

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part Two, Dominic shares a more in-depth look into his works, including the motivation and reasoning in the physical materials he incorporates into his work. He offers close ups on several pieces in his studio, and shares the inspiration behind the subject matter and materials expressed in his art.

https://www.instagram.com/artistdominic/

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.

Inside The Art Of Dominic Quagliozzi - Part 1 (Video)

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part One, Dominic shares how he first started on his journey expressing his lived experience through art, and how art has integrated in his approach and outlook on life. Hear how his journey through art helps him explore his experiences and forge his identity, create his own language of expression, reclaim agency over CF and transplantation, and deepen his connection to community.

https://www.instagram.com/artistdominic/

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.

Inside The Art Of Dominic Quagliozzi - Part 2 (Audio)

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part Two, Dominic shares a more in-depth look into his works, including the motivation and reasoning in the physical materials he incorporates into his work. He offers close ups on several pieces in his studio, and shares the inspiration behind the subject matter and materials expressed in his art.

https://www.instagram.com/artistdominic/

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.

Inside The Art Of Dominic Quagliozzi - Part 1 (Audio)

Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part One, Dominic shares how he first started on his journey expressing his lived experience through art, and how art has integrated in his approach and outlook on life. Hear how his journey through art helps him explore his experiences and forge his identity, create his own language of expression, reclaim agency over CF and transplantation, and deepen his connection to community.

https://www.instagram.com/artistdominic/

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.

Understanding and Managing Pain in CF: A Biopsychosocial Approach - Amanda Bruce, PhD; Deborah Friedman, PhD

Dr. Amanda Bruce, Associate Professor and licensed clinical psychologist at the University of Kansas Medical Center, and Dr. Deborah Friedman, licensed clinical psychologist in the Massachusetts General Hospital Department of Psychiatry and Assistant Professor of Psychology at Harvard Medical School, discuss the use of cognitive-behavioral therapy (CBT) for reducing pain related to CF. They share findings from stakeholder interviews about the experience of living with both CF and chronic pain, as well as describe evidence-based mind-body approaches to pain management. This presentation was part of CFRI's 36th National CF Education Conference.

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

Improving CF Airway Mucociliary Clearance: Toward Transition from Animals to Humans - Carlos Milla, MD; Nam Soo Joo, PhD

Dr. Carlos Milla, Professor of Pediatrics at Stanford University School of Medicine and the Director of the Stanford Cystic Fibrosis Center, and Dr. Nam Soo Joo, Senior Research Scientist in the Department of Pediatrics at Stanford University, present results from CFRI-funded research on improving CF airway mucociliary clearance. They discuss results from experiments with tracheae from ferrets and piglets. This presentation was part of CFRI's 36th National CF Education Conference.

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

Targeting IRBIT to Correct Bicarbonate Secretory Defects in Cystic Fibrosis - Zachary Sellers, MD, PhD

Dr. Zachary Sellers, Assistant Professor of Pediatrics and the Associate Chair of Research in Pediatric Gastroenterology at Stanford University, presents results from CFRI-funded research on targeting IRBIT to correct bicarbonate secretory defects in CF. His work aims to identify new ways to treat CF-associated gastrointestinal complications regardless of the underlying CFTR mutation. This presentation was part of CFRI's 36th National CF Education Conference.

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