The CFRI CF Community Voices Podcast

Individualized Nutrition Therapy for People with CF – Virginia Stallings, MD

Weight gain has historically been an issue for many individuals with cystic fibrosis, and nutritional status and lung function are closely linked. Dr. Virginia Stallings, a nutrition pediatrician and professor of pediatrics at Children’s Hospital of Philadelphia and University of Pennsylvania Perelman School of Medicine has worked in nutrition clinical care and research for more than 30 years. Dr. Stallings designed and led the NIH-funded study on Encala™ for people with cystic fibrosis. In this podcast she discusses pancreatic insufficiency and the reasons for poor nutrient absorption among many with CF, and the results of the clinical trials with Encala in improving nutritional status.

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

Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766

Individualized Nutrition Therapy for People with CF – Virginia Stallings, MD (Audio)

Weight gain has historically been an issue for many individuals with cystic fibrosis, and nutritional status and lung function are closely linked. Dr. Virginia Stallings, a nutrition pediatrician and professor of pediatrics at Children’s Hospital of Philadelphia and University of Pennsylvania Perelman School of Medicine has worked in nutrition clinical care and research for more than 30 years. Dr. Stallings designed and led the NIH-funded study on Encala™ for people with cystic fibrosis. In this podcast she discusses pancreatic insufficiency and the reasons for poor nutrient absorption among many with CF, and the results of the clinical trials with Encala in improving nutritional status.

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

Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766

Imagining the Impossible: post-podcast Q&A wtih Luanne McKinnon

In this follow-up to Luanne McKinnon's inspiring and insightful podcast, CFRI's Siri Vaeth and Stacie Reveles ask Luanne – artist, writer, curator, woman with CF, and transplant recipient – questions from podcast viewers. Imagining the Impossible - Holding the Miracle took viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating adventures culminating in her life-changing transplant at Stanford nearly 10 years ago.

Imagining the Impossible with Luanne McKinnon

In this inspiring and insightful podcast, Luanne McKinnon – artist, writer, curator, woman with CF, and transplant recipient takes viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating global adventures, culminating in her life-changing transplant at Stanford nearly 10 years ago. Imagining the Impossible - Holding the Miracle provides life lessons for all.

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

Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766

Imagining the Impossible: post-podcast Q&A with Luanne McKinnon (audio)

In this follow-up to Luanne McKinnon's inspiring and insightful podcast, CFRI's Siri Vaeth and Stacie Reveles ask Luanne – artist, writer, curator, woman with CF, and transplant recipient – questions from podcast viewers. Imagining the Impossible - Holding the Miracle took viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating adventures culminating in her life-changing transplant at Stanford nearly 10 years ago.

Imagining the Impossible with Luanne McKinnon (audio)

In this inspiring and insightful podcast, Luanne McKinnon – artist, writer, curator, woman with CF, and transplant recipient takes viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating global adventures, culminating in her life-changing transplant at Stanford nearly 10 years ago. Imagining the Impossible - Holding the Miracle provides life lessons for all.

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

Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766

Stem Cell Research, Lung Organoids & Cystic Fibrosis

Dr. Brigitte Gomperts, leads a lab at the Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA. Her research focuses on the role stem cells play in repairing and regenerating the lungs after injury; her lab was the first to use stem cells to create lung-like organoids that mimic the air sac structures of actual lungs that – among other things – are used for high-throughput drug screening, and which someday might lead to the generation of patient-specific transplantable lung tissue. CFRI endorses CA Proposition 14 to continue funding stem cell research. Dr. Gomperts’ work is an example of the vital research funded through the California Institute of Regenerative Medicine.

Recorded 10/26/2020

COVID-19 and Cystic Fibrosis: Q&A Session #12 with Rick Moss, MD - September 15, 2020.

Rick Moss, MD, CF clinician and researcher at Stanford, answers CF and COVID-19-related questions submitted by our community over the past weeks related to testing, vaccine progress, returning to school and more. This most recent session was recorded on September 10, 2020.

We thank Vertex Pharmaceuticals, Gilead Sciences, Genentech, Chiesi USA, and Mylan Pharmaceuticals for their support of these podcasts.

Contraception in the Era of CFTR Modulators

On Tuesday July 21, 2020, CFRI hosted a webinar on Contraception in the Era of CFTR Modulators. Emily Godfrey, MD, MPH (University of Washington), Patricia Walker, MD (Mount Sinai Beth Israel, NY), Molly Pam and Laura Mentch (women with CF) discussed the epidemiology of unplanned pregnancy and contraceptive need among women with CF; how hormonal contraception may affect CF disease; and contraceptive considerations in the era of CFTR modulators.

CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA and Mylan Pharmaceuticals.

Bringing Patient Centered Outcomes Research to the CF Community

The vital impact of patient centered outcomes research is increasingly understood. Emily Godfrey, MD, MPH, Associate Professor in the Departments of Family Medicine and Obstetrics and Gynecology at the University of Washington, and Laura Mentch, adult with CF and patient-partner with the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC), share their expertise and experience in bringing patient centered outcomes research to the CF community.

We thank our sponsors, Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA and Mylan Pharmaceuticals.