The CFRI CF Community Voices Podcast

CF Fitness and Strength Building: An Interview with Taylor Lewis (Audio)

Taylor Lewis, MS, runs the Cystic Fibrosis Fitness Institute in Northern California, where he helps develop personalized exercise and fitness programs for individuals with CF. He has worked with hundreds of people - both virtually and in person - to help them to build strength and endurance for the CF road. He is also an instructor through CFRI's Breathe In ~ Work Out CF Wellness Initiative, through which he teaches an online "Knowledge in Motion" class.

Filmed by Brandon Delgado.
Sound by Alana Ocampo

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

Advanced Lung Disease in Children - Carol Conrad, MD

Carol Conrad, MD, is the Medical Director of the Pediatric Lung and Heart-Lung Transplant Program, and Associate Professor of Pediatrics at Stanford University. While the number of children with cystic fibrosis requiring a double lung transplant are declining due to new therapies, each year, several children experience advanced end-stage lung disease requiring transplant. In this presentation, Dr. Conrad shares the history of pediatric transplant, the challenges and outcomes, and the future of transplant.

Filmed by Brandon Delgado and Alana Ocampo.

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

Advanced Lung Disease in Children - Carol Conrad, MD (Audio)

Carol Conrad, MD, is the Medical Director of the Pediatric Lung and Heart-Lung Transplant Program, and Associate Professor of Pediatrics at Stanford University. While the number of children with cystic fibrosis requiring a double lung transplant are declining due to new therapies, each year, several children experience advanced end-stage lung disease requiring transplant. In this presentation, Dr. Conrad shares the history of pediatric transplant, the challenges and outcomes, and the future of transplant.

Filmed by Brandon Delgado and Alana Ocampo.

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

Pound for CF Fitness - Amy Rad (Video)

Amy Rad teaches Pound Fitness, an exercise class which integrates the use of drumsticks and high-energy music to encourage a fun and effective workout. Amy's class is part of CFRI's Breathe In ~ Work Out CF Wellness Initiative, a series of online classes that promote physical wellness and community connection with others impacted by CF.

Filmed by Brandon Delgado and Alana Ocampo.

CF Community Voices is funded by grants from Vertex Pharmaceuticals, Chiesi USA and Gilead Sciences

Pound for CF Fitness - Amy Rad - Audio

Amy Rad teaches Pound Fitness, an exercise class which integrates the use of drumsticks and high energy music to encourage a fun and effective workout. Amy's class is part of CFRI's Breathe In ~ Work Out CF Wellness Initiative, a series of online classes that promote physical wellness and community connection with others impacted by CF.

Filmed by Brandon Delgado and Alana Ocampo.

CF Community Voices is funded by grants from Vertex Pharmaceuticals, Chiesi USA and Gilead Sciences

CFRI's Breathe In ~ Work Out CF Wellness Initiative is funded through a Circle of Care grant from Vertex Pharmaceuticals.

"Ask The Experts" Panel: 2018 Conference Presenters - Video

Manu Jain, MD, Reid D'Amico, PhD, Richard Moss, MD, Chelsea Toth, DSW, and Elaine Chen, MD, all conference presenters at CFRI's 31st National CF Family Education Conference, participate on a panel to answer questions from conference attendees.

This presentation was made on August 5, 2018, at CFRI's 31st National Cystic Fibrosis Family Education Conference.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.

Advances in Lung Transplantation - Rupal Shah, MD and Jasleen Kukreja, MD

Dr. Rupal Shah and Dr. Jasleen Kukreja, both of UC San Francisco, provide a fascinating presentation reviewing the transplantation process, from the initial evaluation to post-transplant outcomes, for recipients with cystic fibrosis, and providing a fascinating overview of the newest innovations in lung transplant care for patients with cystic fibrosis.

This presentation was made on August 4, 2018, at CFRI's 31st National Cystic Fibrosis Family Education Conference.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.

Running, Adversity and CF - Sabrina Walker Video

Cystic fibrosis was once pegged as a childhood disease but now has transitioned into a disease where people are living beyond childhood and into adulthood. Sabrina discusses strategies for coping with the unpredictable challenges that arise when living with cystic fibrosis. While staying adherent with medications and airway clearance is essential, Sabrina touches upon exercise as a complementary way to maintain health among those with CF. People with CF are now facing new life challenges like planning for the future in terms of careers, marriage, children and college. As an adult who is married and has a three-year-old son, Leo, Sabrina provides her personal perspective on having children with CF.

This presentation was made on August 5, 2018, at CFRI's 31st National Cystic Fibrosis Family Education Conference.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.

Fungi in CF: Observers or Actors? Richard Moss, MD - Video

Fungal infection in cystic fibrosis is a recognized challenge. In his presentation, Dr. Moss outlines our current understanding of the prevalence and diversity of fungal presence in the CF respiratory tract, and risk factors for acquiring fungi. He also addresses some of the body’s responses, advances in the diagnostic approaches to isolating and identifying fungi in CF respiratory samples,, and the challenges of classifying clinical presentations and problems (“phenotypes”) of CF patients harboring fungi, as well as current treatment approaches.

This presentation was made on August 5, 2018, at CFRI's 31st National Cystic Fibrosis Family Education Conference.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.

Science, Advocacy & Life with CF - Reid D'Amico, PhD - Video

As a member of the cystic fibrosis (CF) community, Reid discusses his personal experience as an adult with CF, along with his professional experiences as a biomedical engineer, advocate, and incoming scholar at the US Food and Drug Administration. Reid speaks about how CF can be used as a foundation for advancing insight in the fields of engineering and science. In particular, Reid shares how being an adult with CF allows him to experience the world differently, and ultimately influences his ability to innovate and create policy. Key objectives of Reid’s talk include: providing an overview of the psychological and physical challenges that may face members of the CF community in the lab or workplace; using a CF identity to challenge the status quo; discussing how the CF community can teach others to be agents of change in their personal and professional lives.

This presentation was made on August 3, 2018, at CFRI's 31st National Cystic Fibrosis Family Education Conference.

Conference sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and the Boomer Esiason Foundation.