The CFRI CF Community Voices Podcast

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.

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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

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.

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.

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.

In honor of National Handshake Day, CFRI’s CF Adult Advisory Committee is launching part two of their “Greet Me Germ Free” campaign to raise awareness of the hazards of hand shaking. Hand shaking is known to be a primary source for the transmission of disease, especially important in the times of COVID-19. In this podcast, members of the Committee talk about issues they’ve encountered with our hand-shaking culture, some ways they have found to work around it, and some fun alternatives to say hello.

 

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

 

Track: Freedom

Music by Oak Studios

https://youtu.be/2M2Gk68sfYw

 

–––––––––––––––––––––––––––––– My Itinerary by Tokyo Music Walker https://soundcloud.com/user-356546060 Creative Commons — Attribution 3.0 Unported — CC BY 3.0 Free Download / Stream: https://bit.ly/t-w-my-itinerary Music promoted by Audio Library https://youtu.be/AKy14wPxaSo –––––––––––––––––––––––––––––– 🎵 Track Info: Title: My Itinerary by Tokyo Music Walker Genre and Mood: Dance & Electronic + Romantic ——— 🎧 Available on: Spotify: https://spoti.fi/2YNS9dc iTunes: https://apple.co/2Yai1RJ Deezer: https://deezer.com/us/track/961112922 YouTube: https://youtube.com/watch?v=jNfw2c3pWrw SoundCloud: https://soundcloud.com/user-356546060... ——— 😊 Contact the Artist: Tokyo Music Walker: https://soundcloud.com/user-356546060 https://youtube.com/channel/UC3lLfvhp... https://open.spotify.com/artist/7cktl... https://music.apple.com/us/artist/tok... https://play.google.com/store/music/a... https://instagram.com/tokyo_music_wal... ———

 

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Rick Moss, MD, CF clinician and researcher at Stanford, answers CF and COVID-19-related questions submitted by our community over the past week related to antibody tests, impacts on those with CF, and much more. This session was recorded on June 24, 2020.

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

Track: Woods Artist: Federico Fabbiano Music provided by Oak Studios https://youtu.be/eAiAlg22gqQ

 

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On January 7, 2021, CFRI hosted a webinar with Dr. Rick Moss, CF clinician and researcher at Stanford. Dr. Moss gave an overview of the current state of the pandemic - including its impact upon those with cystic fibrosis - and answered questions from the CF community with a focus on vaccines.

CF Community Voices is sponsored to date by Chiesi USA.

If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766

On January 7, 2021, CFRI hosted a webinar with Dr. Rick Moss, CF clinician and researcher at Stanford. Dr. Moss gave an overview of the current state of the pandemic - including its impact upon those with cystic fibrosis - and answered questions from the CF community with a focus on vaccines.

CF Community Voices is sponsored to date by Chiesi USA.

If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766

The role of anti-inflammatories in CF care is vital. Lenabasum, Corbus Pharmaceuticals' investigational drug that mimics the effects of endocannabinoids in regulating inflammation, has been tracked through the clinical trial process with tremendous optimism. Dr. Chmiel, Principal Investigator of CF-002 (lenabasum), and Division Chief for Pediatric Pulmonology, Allergy and Sleep Medicine at Indiana University School of Medicine, reviews the results of the recent Phase IIb trial, and its implications for the CF community.

Sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, Genentech, and Viatris, with additional support from Corbus Pharmaceuticals.