“Ask The Experts” Panel: 2018 Conference Presenters - Video

August 29, 2018

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.

Watch Now:

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

August 29, 2018

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.

Watch Now:

Running, Adversity and CF - Sabrina Walker Video

August 29, 2018

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.

Watch Now:

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

August 29, 2018

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.

Watch Now:

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

August 29, 2018

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.

Watch Now:

CF Pipeline: The Journey Continues - Manu Jain, MD - Video

August 29, 2018

Life expectancy in cystic fibrosis (CF) has improved substantially over the last 75 years, with a median predicted survival of approximately 47 years. This has been due for the most part to therapies that have targeted lung disease and other end organ manifestations in an attempt to disrupt the cycle of mucous obstruction, inflammation, and infection. In his fascinating overview of the CF therapeutic pipeline, Dr. Jain discusses CFTR modulators, RNA editing, novel anti-inflammatory drugs, antibiotics and advances in lung transplantation.

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.

Watch Now:

Ouch! Living with Pain in Cystic Fibrosis - Elaine Chen, MD - Video

August 29, 2018

Both acute and chronic pain are common in people with CF, and can significantly impact quality of life and adherence to therapies. In this presentation, Dr. Chen describes some of the causes for pain CF, and strategies for managing pain. A variety of causes exist for pain in CF, which can be related to complications of CF, treatments for CF, or unrelated to CF. Dr. Chen reviews a range of strategies for managing pain that includes a multi-disciplinary approach.

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.

Watch Now:

Bridging the Gap Between Isolation & Social Connection - Chelsea Toth, DSW - Video

August 29, 2018

Medical guidelines recommend strict separation of individuals with CF to reduce the risk of cross-infection. With the loss of opportunities for in-person socialization, many with CF experience social isolation. Dr. Toth discusses the impacts upon social isolation upon the mental health of those with CF, and strategies to address them.

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.

Watch Now:

History & Future of CFTR Modulators - Alan Verkman, MD, PhD - Video

August 29, 2018

The first “potentiators” of mutant CFTRs, which rescue their defective chloride channel function, were identified by high-throughput screening and reported by Dr. Verkman’s lab in 2003, and in 2005 they reported the first “correctors” of defective cellular processing of the deltaF508 CFTR mutant. Dr. Verkman provides a comprehensive overview of the history and future of CFTR modulators, advances in “CFTR-agnostic” therapies, and other hopes for transformative CF therapeutic options.

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.

Watch Now:

“Ask The Experts” Panel: 2018 Conference Presenters - Audio

August 29, 2018

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.

00:0000:00