CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
…
continue reading
A dynamic Cystic Fibrosis Podcast, educating people on the different experiences and lives that CFers face. Discussing all sides of CF, including the fearful, the ambitious, the emotional and the challenging. A podcast that is purposely made to educate but more importantly comfort fellow CFers and support the CF community💛
…
continue reading
When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong. What the CF! was born out of a curiosity to learn more, support others, and share experiences while we navigate our own CF journey. We want to tell the stories of others and answer the FAQ's that come along with a diagnosis. We'll seek the knowledge of experts and those living wit ...
…
continue reading
![Artwork](/static/images/128pixel.png)
1
All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Video)
27:24
27:24
Play later
Play later
Lists
Like
Liked
27:24
In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
All That Really Matters: A Conversation & Book Reading with Dr. David Weill (Audio)
27:24
27:24
Play later
Play later
Lists
Like
Liked
27:24
In this podcast, David Weill, MD, discusses his newest – and first fictional – book, All That Really Matters, in which transplant plays a central theme. Dr. Weill spent over 20 years as a transplant physician, including as Director of Stanford’s Center for Advanced Lung Disease and the Lung Transplant Program. In addition to sharing a reading from …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Demystifying the Colonoscopy Process - Jeffrey King, MD (Video)
59:00
59:00
Play later
Play later
Lists
Like
Liked
59:00
Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped th…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Demystifying the Colonoscopy Process - Jeffrey King, MD (Audio)
59:00
59:00
Play later
Play later
Lists
Like
Liked
59:00
Colonoscopy screenings are the #1 way to prevent colon cancer. In this recorded webinar, join Jeffrey King, MD, gastroenterologist at National Jewish Health, for a candid conversation about how to prepare for a successful colonoscopy as someone with CF, and what to expect during the procedure. By demystifying the colonoscopy process, it is hoped th…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Video)
30:05
30:05
Play later
Play later
Lists
Like
Liked
30:05
In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile mea…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Stretch Your Budget: What To Make With What You Have - Maggie Williamson (Audio)
30:06
30:06
Play later
Play later
Lists
Like
Liked
30:06
In this third podcast of our Stretch Your Budget series, join Maggie Williamson, a professional chef living with cystic fibrosis post-transplant, to learn tips on what to shop for and how to stretch $20 to create several days’ worth of meals. Maggie provides a base recipe for ‘batch cooking’ (see link below) to make large quantity and versatile mea…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
How To Plan For the Future On Limited Resources - Arek Puzia, MBA (Video)
21:15
21:15
Play later
Play later
Lists
Like
Liked
21:15
In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some ti…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
How To Plan For the Future On Limited Resources - Arek Puzia, MBA (Audio)
21:16
21:16
Play later
Play later
Lists
Like
Liked
21:16
In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some ti…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Stretch Your Budget: CF Food Expenses – A Panel Discussion (Video)
37:47
37:47
Play later
Play later
Lists
Like
Liked
37:47
The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies t…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Stretch Your Budget: CF Food Expenses – A Panel Discussion (Audio)
37:47
37:47
Play later
Play later
Lists
Like
Liked
37:47
The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies t…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Stretch Your Budget: CF Living Expense – Resources (Video)
23:26
23:26
Play later
Play later
Lists
Like
Liked
23:26
In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Stretch Your Budget: CF Living Expense – Resources (Audio)
23:26
23:26
Play later
Play later
Lists
Like
Liked
23:26
In this second podcast in our Stretch Your Budget series, Tiffany Raffino, LCSW, MSW, CF Social Worker at UCSF, connects families impacted by cystic fibrosis with resources to help ease financial burdens and elevate quality of life. Tiffany addresses health insurance, medication assistance, financial assistance, transportation, caregiving support, …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Unleashed Stories: CF Pet Perspectives (Video)
14:07
14:07
Play later
Play later
Lists
Like
Liked
14:07
In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners.…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Unleashed Stories: CF Pet Perspectives (Audio)
14:07
14:07
Play later
Play later
Lists
Like
Liked
14:07
In this podcast, you’ll meet the pets that make a big difference in the lives of adults living with cystic fibrosis and hear stories of how these furry friends provide unconditional love, support, and acceptance. The CDC acknowledges that the bond between people and their pets can increase fitness, lower stress, and bring happiness to their owners.…
…
continue reading
People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar. CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse…
…
continue reading
People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar. CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse…
…
continue reading
La guía integral de recursos de CFRI proporciona información sobre varios programas ofrecidos por nuestros socios. Escuche a Alicia Maciel, miembro de la comunidad de CFRI, mientras explica dónde encontrar y como utilizar la guía de recursos de asistencia al paciente de CFRI. Manténgase informado de cómo acceder a fuentes de apoyo financiero, asist…
…
continue reading
¿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, ha…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Diversity, Equity and Inclusion in Cystic Fibrosis
3:00
3:00
Play later
Play later
Lists
Like
Liked
3:00
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Role of CFTR Arginine-933 in FDA-Approved Drug Potentiation - Stephen Aller, PhD (Video)
26:49
26:49
Play later
Play later
Lists
Like
Liked
26:49
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 quantiti…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Role of CFTR Arginine-933 in FDA-Approved Drug Potentiation - Stephen Aller, PhD (Audio)
26:49
26:49
Play later
Play later
Lists
Like
Liked
26:49
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 quantiti…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Pathways Balancing Basal Mucin and CFTR-Mediated Fluid Secretion in the Human Distal Airway - Kenichi Okuda, MD, PhD (Video)
32:07
32:07
Play later
Play later
Lists
Like
Liked
32:07
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 re…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Pathways Balancing Basal Mucin and CFTR-Mediated Fluid Secretion in the Human Distal Airway - Kenichi Okuda, MD, PhD (Audio)
32:07
32:07
Play later
Play later
Lists
Like
Liked
32:07
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 re…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Embracing the Future: Aging with CF - Ahmet Uluer, DO, MPH; CF and Colon Cancer: My Lived Experience - Anna Payne
54:22
54:22
Play later
Play later
Lists
Like
Liked
54:22
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Panel: Parenting with CF - Lucy Barnes; Matthew DeFina; Carl Robinson; moderated by Mary Helmers, RN
36:11
36:11
Play later
Play later
Lists
Like
Liked
36:11
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 man…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Advances in mRNA Therapy: New Applications for Cystic Fibrosis - Deepika Polineni, MD, MPH
36:32
36:32
Play later
Play later
Lists
Like
Liked
36:32
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 an…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Inside The Art Of Dominic Quagliozzi - Part 2 (Video)
20:59
20:59
Play later
Play later
Lists
Like
Liked
20:59
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Inside The Art Of Dominic Quagliozzi - Part 1 (Video)
15:24
15:24
Play later
Play later
Lists
Like
Liked
15:24
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Inside The Art Of Dominic Quagliozzi - Part 2 (Audio)
20:59
20:59
Play later
Play later
Lists
Like
Liked
20:59
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Inside The Art Of Dominic Quagliozzi - Part 1 (Audio)
15:24
15:24
Play later
Play later
Lists
Like
Liked
15:24
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…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Understanding and Managing Pain in CF: A Biopsychosocial Approach - Amanda Bruce, PhD; Deborah Friedman, PhD
42:43
42:43
Play later
Play later
Lists
Like
Liked
42:43
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 …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Improving CF Airway Mucociliary Clearance: Toward Transition from Animals to Humans - Carlos Milla, MD; Nam Soo Joo, PhD
21:01
21:01
Play later
Play later
Lists
Like
Liked
21:01
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 resul…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Targeting IRBIT to Correct Bicarbonate Secretory Defects in Cystic Fibrosis - Zachary Sellers, MD, PhD
35:45
35:45
Play later
Play later
Lists
Like
Liked
35:45
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 regard…
…
continue reading
…
continue reading
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Nanotechnology Toolkits for Cystic Fibrosis Gene Therapies - Steven Jonas, MD, PhD
34:35
34:35
Play later
Play later
Lists
Like
Liked
34:35
Dr. Steven Jonas, Assistant Professor in the Department of Pediatrics at the UCLA David Geffen School of Medicine and California NanoSystems Institute, presents results from CFRI-funded research on nanotechnologies for CF gene therapy. He presents a suite of tools and methods that could serve as building blocks for establishing CF gene therapy solu…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Tolerance to Cell-Permeable Antibiotics: Intracellular Adaptations of Pseudomonas aeruginosa - Naren Kumar, PhD
26:58
26:58
Play later
Play later
Lists
Like
Liked
26:58
Dr. Naren Kumar, post-doctoral fellow in the lab of Dr. Suzanne Fleiszig at the University of California Berkeley, presents results from CFRI-funded research on intracellular diversification of Pseudomonas aeruginosa in chronic lung infections. He discusses findings from experiments using live timelapse imaging and molecular methods to determine ge…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Airway Stem Cell Transplantation into the Sinuses Using Fibrinogen Scaffolds - Sriram Vaidyanathan, PhD
21:26
21:26
Play later
Play later
Lists
Like
Liked
21:26
Dr. Sriram Vaidyanathan, a principal investigator in the Center for Gene Therapy at the Abigail Wexner Research Institute at Nationwide Children’s Hospital in Ohio, presents results from CFRI-funded research on airway stem cell transplantation into the sinuses using fibrinogen scaffolds. This presentation was part of CFRI's 36th National CF Educati…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
Development of Bacteriophage Therapy for Antimicrobial-Resistant Infections in Cystic Fibrosis - Paul Bollyky, MD, PhD
49:15
49:15
Play later
Play later
Lists
Like
Liked
49:15
Dr. Paul Bollyky, an Associate Professor and an infectious disease physician at Stanford University, presents results from CFRI-funded research on the development of phage therapy for antimicrobial-resistant infections in CF. He discusses a novel approach to design effective, broad-spectrum phage cocktails that relies on combining phages with diffe…
…
continue reading
Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023. If you watched this episode, please tell us what you think at https://www.surveymo…
…
continue reading
Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023. If you watched this episode, please tell us what you think at https://www.surveymo…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
All Hands on Deck to Cure Cystic Fibrosis - Matthew Porteus, MD, PhD (Video)
36:41
36:41
Play later
Play later
Lists
Like
Liked
36:41
Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
All Hands on Deck to Cure Cystic Fibrosis - Matthew Porteus, MD, PhD (Audio)
36:41
36:41
Play later
Play later
Lists
Like
Liked
36:41
Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
From Defining Health Disparities to Improving Health Equity in CF - Susanna McColley, MD, FAAP, ATSF (Video)
44:23
44:23
Play later
Play later
Lists
Like
Liked
44:23
Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, new…
…
continue reading
![Artwork](/static/images/128pixel.png)
1
From Defining Health Disparities to Improving Health Equity in CF - Susanna McColley, MD, FAAP, ATSF (Audio)
44:23
44:23
Play later
Play later
Lists
Like
Liked
44:23
Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, new…
…
continue reading
…
continue reading
…
continue reading
![Artwork](/static/images/128pixel.png)
1
CF in Pakistan – A Doctor’s Crusade for Change - 3 of 3 (Video)
18:08
18:08
Play later
Play later
Lists
Like
Liked
18:08
In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be …
…
continue reading
![Artwork](/static/images/128pixel.png)
1
CF in Pakistan – A Doctor’s Crusade for Change - 3 of 3 (Audio)
18:08
18:08
Play later
Play later
Lists
Like
Liked
18:08
In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be …
…
continue reading
Ingrid chats to CFNZ Chief Executive, Lisa Burns. They discuss what CFNZ does for CFers and their families throughout their lives and what the organisation's plans are for the future to make sure no one is left behind now that Trikafta is funded. There's still no cure, and not everyone can take Trikafta, so CFNZ want all in the community to know th…
…
continue reading