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 38, Host Niall McKay has an illuminating conversation with Jessica and Ian Travis about Jessica's journey with PSC, her search for a liver, and how her husband Ian became her live donor. "I had alot of issues when I was first listed (for a liver transplant). I was having alot of panic attacks. I couldn't figure out why I was having them. I think alot of it was not having control over the situation." says Jessica. According to the couple, their story involves lots of assistance and kindness from others along the way.

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 epidode 37 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Laura Cristoferi, hepatologist, clinical research fellow, and PhD candidate, at Milano Bicocca University in Italy. They discuss PSC diagnosis and disease progression, the importance of PSC registries to share knowledge and improve research, various PSC therapies, and more. "We are building a national PSC registry in Italy," says Dr. Cristoferi. "We are trying to build a network in order to improve knowledge for diagnosis and management of this disease...and in order to have a rapid connection in case of clinical trials. Using this registry, we will have precise epidemiological data." Dr. Cristoferi highlights various research endeavors including her project aimed at discovering biomarkers to enable a more precise determination of PSC disease progression over time.

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 36 of the Living with PSC Podcast, Host Niall McKay talks about drug repurposing with Ania Korsunska, MA, Biomedical Leadership Fellow and ROADMAP Project Lead, Castleman Disease Collaborative Network (CDCN). "(Drug repurposing) is an opportunity to utilize existing drugs that are in development or already approved and redirect for the rare disease space," says Korsunska. "It's potentially cheaper than novel drug development, potentially faster. It's potentially easier to get these drugs into a position that a doctor can actually prescribe them."

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 35 of the Living with PSC Podcast, Host Niall McKay talks with Dr. Kidist Yimam, Medical Director of the Autoimmune Liver Disease Program at California Pacific Medical Center. She is also a member of the PSC Partners Diversity, Equity, and Inclusion Working Group. In this podcast, they discuss health inequalities in PSC, including provider bias, lack of access to care, delay in diagnosis, importance of diversity in clinical trials, and more. "It is not unusual to hear from some of our minority patients that they've been told by other providers that PSC affects people who are Caucasian, and they shouldn't be affected by the disease, leading to a delay in diagnosis of PSC, and even putting them at risk of poorer outcomes," says Dr. Yimam. McKay and Yimam also discuss how including a diverse group of people in PSC natural history studies will allow researchers to better understand how genetics, socio-economic factors, cultural biases, and more affect the search for treatments and a cure for PSC. To make that happen, diversity is needed within the PSC Partners Patient Registry.

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 34 of the Living with PSC Podcast, Host Niall McKay talks with Nicola Tessier, a post-transplant PSC patient, about her PSC diagnosis, dealing with symptoms, MELD score issues for PSC patients, receiving a living donor liver transplant from her brother, having children post-transplant, and much more. "The need for a liver transplant was heavily driven by my (increased) risk for cholangiocarcinoma," says Tessier. "On paper, I looked less sick than I really was. So, the option of a living donor was a better fit for me." She received 56% of her younger brother's liver. "It was a very special day," she says.

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 33 of the Living with PSC Podcast, Host Niall McKay talks with Hepatologist and Senior Research Clinician Theo Heller, MD, and Hepatology Fellow Gracia Viana, MD, National Institute for Health (NIH) Clinical Center, about their primary sclerosing cholangitis (PSC) study.

"We want to study the evolution of PSC," says Dr. Heller. "We're proposing a study that has the potential of unraveling some of the most fundamental aspects of the disease."

Information about this study will be sent to PSC Partners Registry participants. If you are a PSC patient but have not yet joined the Patient Registry, now would be a good time. www.pscpartnersregistry.org

Questions about the Registry? Email: [email protected]

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 32, Host Niall McKay talks with Dr. Espen Melum, MD, PhD, Norwegian PSC Research Center, about a new discovery in PSC research. Dr. Melum and his colleagues have discovered antigens that activate T cells, or MAIT cells, that are present in a number of PSC patients participating in the study. These findings point to the role of contaminated bile in the onset of 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 31, Host Niall McKay talks with Josh Korzenik, MD, Brigham and Women's Hospital, and Dan Pratt, MD, Massachusetts General Hospital, about the upcoming 2022 Annual PSC Partners Conference, June 2-5, now in a virtual format. This is the second of two conversations about this Conference. "It's going to be a slightly different and very exciting conference," says Dr. Korzenik. "It's envisioning a very different kind of future for PSC where there's a broader engagement of everybody, and it's really becoming much more of an international community, which is very exciting." Dr. Pratt agrees, adding, "An exciting research initiative that will be rolled out at the conference is the WIND Initiative (Worldwide Integration of Natural History Databases), which will, hopefully, accelerate our identification of new therapies for 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 30, Host Niall McKay talks with Joanne Hatchett, Medical Science Liaison for PSC Partners, about the upcoming 2022 Annual PSC Partners Conference, June 2-5, now in a virtual format. This is the first of two conversations about this topic. "Dr. Josh Korzenik of Brigham and Women's and Dr. Dan Pratt of Mass General Hospital have been working with our PSC team to plan an amazing conference this year," says Hatchett. "Sessions will focus on featuring the patient's voice, because that's at the heart of the conference, (and we're also planning) many ways to meet, (learn), and socialize before during and after the (virtual event).

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 29, Host Niall McKay talks with Dr. Ruth-Anne Pai, PhD, PSC Partners Former Director of Research Strategy. They discuss the future of PSC research, the importance of patient voice and participation, PSC Partners research priorities, and more. "We, as a community, with the patient voice, are prioritizing the most important questions," says Pai, adding that three primary areas of focus have been identified, so far. "Having a Patient-Reported Outcome Measure (PROM), surrogate endpoints, and an external control arm (will), we hope, accelerate and improve the rate of success for clinical trials."