Living With PSC

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 28, Host Niall McKay talks with Dr. Steven O'Hara, PhD, Associate Professor of Medicine, Assistant Professor of Biochemistry and Molecular Biology, and Research Scientist, Division of Gastroenterology and Hepatology at Mayo Clinic. They discuss the search for treatments and a cure for PSC. "We're interested in the gut microbiome, of course, because we know there's a link between inflammatory bowel disease and primary sclerosing cholangitis," says Dr. O'Hara. "The multitude of microorganisms in the gut certainly influence many different diseases. There's increasing evidence that it may influence PSC, as well. So, our link would be what's happening in the gut...How does it actually affect the biliary epithelial cell function in this disease?"

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 27, Host Niall McKay talks with PSC Partners Medical Science Liaison and PSC Caregiver Joanne Hatchett. They discuss her role at PSC Partners, the value of PSC Partners efforts to represent the patient voice, the current and future state of PSC research, the aim of the PSC Partners Roadmap Initiative, and more. "Researchers have said that PSC is the black box of liver diseases," says Hatchett. "So little is known, and we need to delve deep, so that we discover the unknown aspects of (this rare disease)."

Click here to visit the ROADMAP Initiative webpage.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 26, Host Niall McKay talks with Dr. Cyriel Ponsioen, senior staff member at the Department of Gastroenterology & Hepatology at the Academic Medical Center (AMC) in Amsterdam, about research being done to determine the benefits of fecal microbiota transplantation in PSC patients with IBD. During the conversation, McKay and Ponsioen also speak about antibiotics, bacteriophages, the creation of the International PSC Study Group, and more.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 25, Host Niall McKay talks with Dr. Gideon Hirschfield about the use of antibiotics for the treatment of infection in primary sclerosing cholangitis (PSC). Hirschfield says that antibiotics are used for the treatment of intermittent, symptomatic cholangitis in patients with PSC. "There's no evidence that the long-term use of antibiotics will change what ultimately happens to PSC patients," says Dr. Hirschfield. "But there's definitely evidence that, once you've got an infection, that drives PSC progression, which makes sense. Once the biliary tree is inflamed, it's never the same." McKay and Hirschfield touch on various PSC-related topics, including research into new ways to treat PSC symptoms. Dr. Hirschfield is the inaugural Lily and Terry Horner Chair in Autoimmune Liver Disease Research at the Toronto Centre for Liver Disease, Toronto General Hospital, and Professor of Medicine in the Division of Gastroenterology at the University of Toronto. As a clinician-scientist, Dr. Hirschfield manages a broad platform of translational and trials-based clinical science with the goal of advancing therapies for patients with inflammatory liver disease that prevent the need for transplantation.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 24, Host Niall McKay talks with Post-transplant PSCer, Author, Mom, and Host of PSC Mami Podcast Monika Aldarondo. "It's been interesting to learn that recurrent PSC does not follow the same trajectory or path as your original PSC," says Aldarondo. "So far, for me, this has been a really different experience." In the podcast, McKay and Aldarondo cover several interesting topics, including:

• Long-term Prognosis and Recurrence of Primary Sclerosing Cholangitis After Liver Transplantation: A Single-Center Experience
• Ring Theory
• Spoon Theory
• But You Don't Look Sick
• PSC Partners Mentor Program

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 23, Host Niall McKay talks with Dr. Josh Korzenik, gastroenterologist, director of the Resnek Family Center for Primary Sclerosing Cholangitis Research, and director of Brigham and Women's Hospital Crohn's and Colitis Center at Harvard Medical School. They discuss PSC & Diet, Understanding IBD/PSC Relationship, and more. "In order to understand PSC, we need to understand (IBD). That's the best clue we have, and in order to understand (IBD), we need to understand PSC. We think that (they) hold valuable insights for the other," says Dr. Korzenik.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 22, Host Niall McKay talks with PSC Partners Patient Registry Director Rachel Gomel about the value of the PSC Patient Registry and the importance of this database in the search for treatments and a cure for PSC. "The collected information helps in our understanding of where our rare patients are located. The registry also shows us who could be a match for a specific clinical trial, and how aggregated data collected on patients can show disease trends and unmet needs," says Gomel. "The privacy of the patients is of utmost importance to PSC Partners," she adds.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 21, Host Niall McKay talks with Dr. Johannes Hov, professor of gastroenterology, University of Oslo, Norway, and member of the Norwegian PSC research group. They discuss research being done on PSC and the microbiome. "What we have been doing, so far, is really to study the composition of the microbiome in patients with PSC. What we have found is that it's a lot different from individuals who are healthy, but what does this mean? That's really the big question." Hov and McKay explore this in the 21st episode of the Living with PSC Podcast.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In episode 20, Host Niall McKay talks with Julie K. Heimbach, M.D., transplant surgeon and surgical director of Liver Transplantation at Mayo Clinic. They discuss various aspects of PSC and liver transplants. "Ideally, we could provide (liver transplants) at the exact time when it is appropriate for the patient. Unfortunately, there are not enough donor livers available for that to happen," Dr. Heimbach tells McKay in this podcast.

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!

In the 19th episode, Host Niall McKay talks with Dr. Cara Mack, University of Colorado School of Medicine and Children's Hospital Colorado, about pediatric primary sclerosing cholangitis (PSC). They discuss treatments being investigated, symptoms, liver transplant, and more.