The CFRI CF Community Voices Podcast

Cancer de Colon y Fibrosis Quistica

¿Sabía que las personas con FQ tienen entre 5 y 10 veces más probabilidades de desarrollar cáncer de colon?

Las personas con FQ tras un trasplante de pulmón tienen un riesgo entre 25 a 30 veces mayor, y los portadores de FQ también tienen más probabilidades de desarrollar cáncer de colon. Escuche a Alicia Maciel, miembro de la comunidad de CFRI, hablar sobre la hoja informativa del cáncer de colon. Conozca los riesgos y hable con su médico hoy sobre la prevención. 

Diversity, Equity and Inclusion in Cystic Fibrosis

CF impacts people of every race and ethnicity. Due to the misperception of CF as a disease impacting only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences and their commitment to advocating for increased awareness on diversity, equity and inclusion among the CF and general population.

CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech, with additional translation support provided by Genentech.

Role of CFTR Arginine-933 in FDA-Approved Drug Potentiation - Stephen Aller, PhD (Video)

Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Alabama in Birmingham, presents results from CFRI-funded research on the role of CFTR Arginine-933 in FDA-approved drug potentiation. His team used cryo-electron microscopy (cryo-EM) to visualize high-quality structures with limited quantities of purified CFTR. 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.

Role of CFTR Arginine-933 in FDA-Approved Drug Potentiation - Stephen Aller, PhD (Audio)

Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Alabama in Birmingham, presents results from CFRI-funded research on the role of CFTR Arginine-933 in FDA-approved drug potentiation. His team used cryo-electron microscopy (cryo-EM) to visualize high-quality structures with limited quantities of purified CFTR. 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.

Pathways Balancing Basal Mucin and CFTR-Mediated Fluid Secretion in the Human Distal Airway - Kenichi Okuda, MD, PhD (Video)

Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, presents results from CFRI-funded research on pathways maintaining basal mucin and CFTR-mediated fluid secretion in the human distal airway. He argues that airway cells are a therapeutic target for molecular therapy for CFTR function restoration. 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.

Pathways Balancing Basal Mucin and CFTR-Mediated Fluid Secretion in the Human Distal Airway - Kenichi Okuda, MD, PhD (Audio)

Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, presents results from CFRI-funded research on pathways maintaining basal mucin and CFTR-mediated fluid secretion in the human distal airway. He argues that airway cells are a therapeutic target for molecular therapy for CFTR function restoration. 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.

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/

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