The CFRI CF Community Voices Podcast
Health & Fitness
Emily Kramer-Golinkoff, an adult with cystic fibrosis and the Co-Founder of Emily's Entourage, an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of CF, describes her experience growing up with CF and the heart-shattering realization that she is a part of the approximately 10% of the CF community that is ineligible for CFTR modulators. She discusses the promise of science and innovation, each individual’s power to create transformative change, and the unique solidarity and commitment of the whole CF community to create a better future for everyone with CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 31, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Unleashed Stories: CF Pet Perspectives (Video)
Unleashed Stories: CF Pet Perspectives (Audio)
Colon Cancer and CF: Panel (Video)
Colon Cancer and CF: Panel (Audio)
Recursos de asistencia a paciente
Cancer de Colon y Fibrosis Quistica
Diversity, Equity and Inclusion in Cystic Fibrosis
Role of CFTR Arginine-933 in FDA-Approved Drug Potentiation - Stephen Aller, PhD (Video)
Role of CFTR Arginine-933 in FDA-Approved Drug Potentiation - Stephen Aller, PhD (Audio)
Pathways Balancing Basal Mucin and CFTR-Mediated Fluid Secretion in the Human Distal Airway - Kenichi Okuda, MD, PhD (Video)
Pathways Balancing Basal Mucin and CFTR-Mediated Fluid Secretion in the Human Distal Airway - Kenichi Okuda, MD, PhD (Audio)
Embracing the Future: Aging with CF - Ahmet Uluer, DO, MPH; CF and Colon Cancer: My Lived Experience - Anna Payne
Panel: Parenting with CF - Lucy Barnes; Matthew DeFina; Carl Robinson; moderated by Mary Helmers, RN
Advances in mRNA Therapy: New Applications for Cystic Fibrosis - Deepika Polineni, MD, MPH
Inside The Art Of Dominic Quagliozzi - Part 2 (Video)
Inside The Art Of Dominic Quagliozzi - Part 1 (Video)
Inside The Art Of Dominic Quagliozzi - Part 2 (Audio)
Inside The Art Of Dominic Quagliozzi - Part 1 (Audio)
Understanding and Managing Pain in CF: A Biopsychosocial Approach - Amanda Bruce, PhD; Deborah Friedman, PhD
Improving CF Airway Mucociliary Clearance: Toward Transition from Animals to Humans - Carlos Milla, MD; Nam Soo Joo, PhD
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