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THE DUCT
A Monthly Newsletter for the PSC Community
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2023 PSC Partners Annual Conference: That's a Wrap!
View Session Recordings Below.
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Thank you to all 2023 PSC Partners Annual Conference attendees, presenters, and sponsors. The weekend was packed with educational sessions, supportive peer group gatherings, one-on-one connections, and much more. Numerous educational sessions were recorded. If you missed the Conference or would like to revisit sessions, click session titles to link to recordings.
Friday
Moderator: Ricky Safer, CEO, PSC Partners
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Welcome - Ricky Safer, Joshua Korzenik, MD, Brigham and Women’s Hospital, Christopher Bowlus, MD, UC Davis School of Medicine
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Personal PSC Experience - Mahesh Krishna, Medical Student, The Johns Hopkins University School of Medicine, Member PSC Partners Board of Directors
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The State of PSC Research in 2023 - Gideon Hirschfield, FRCP, PhD, University of Toronto
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Driving Progress through Collaboration: CZI Rare As One and Collaborative Research Networks - Stephen Rossi, PharmD, CSO, PSC Partners
Richard Green, MD, Northwestern University Feinberg School of Medicine
Espen Melum, MD, PhD, Oslo University Hospital
In this session, presenters reviewed the indications for liver transplantation, focusing on the U.S. organ allocation system, the unique opportunity a living donor may provide, and exciting new developments in the field of liver transplantation. Presenters also discuss post-transplantation outcomes and some of the center-specific qualities to consider when choosing care.
Joel Pekow, MD, University of Chicago
Joshua Korzenik, MD, Brigham and Women’s Hospital
This session focused on how IBD may be an important key to understanding PSC. Presenters discussed PSC-IBD research approaches and updates from their ongoing studies.
Johannes Hov, MD, PhD, Oslo University Hospital
This presentation focused on enterohepatic circulation, the gut-liver axis, and the gut microbiota, which form the basis for many hypotheses of PSC etiology. Examples of therapeutic approaches were explored.
Sonya MacParland, PhD, University of Toronto
Mary Pressley Vyas, President, PSC Partners Canada
This session focused on how scientists are exploring the cellular ecosystem of the healthy liver vs. the PSC liver to better understand PSC and potentially identify therapeutic targets for PSC. Presenters discussed the four-year, CZI-funded, patient-partnered collaboration between PSC Partners and a scientific team in Toronto, led by Dr. MacParland. The study is focused on uncovering the cellular drivers of PSC.
Moderator: Joanne Hatchett, RN, MS, FNP-retired, Medical Science Liaison, PSC Partners Seeking a Cure
Matt Frankel, MD, MBA: Chemomab Therapeutics - Chief Medical Officer, Vice President of Drug Development
Shirley Dehn: Escient Pharmaceuticals - Associate Director of Clinical Science
Anthony Loizides, MD: Ipsen Biopharmaceuticals - Medical Director of Clinical Development
Ikenna Okechukwu, MD: Ipsen Biopharmaceuticals - Medical Development Director
Chris Peetz: Mirum Pharmaceuticals, Inc. - President & Chief Executive Officer
Richard Pencek, PhD: Pliant Pharmaceuticals - Senior Director, Clinical Development
These five clinical-trial leaders each presented their company's on-going PSC study.
Saturday
Moderator: David Goldberg, MD, MSCE, University of Miami School of Medicine
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Welcome - Don & Ricky Safer, Christopher Bowlus, MD, UC Davis School of Medicine, Joshua Korzenik, MD, Brigham and Women's Hospital
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Blueprint Towards a Cure for PSC - Jesse Kirkpatrick, PhD, Medical Student Harvard University, Member PSC Partners Board of Directors
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PSC Partners ICRNetwork Scientific Convening Takeaways - Joshua Korzenik, MD, Brigham and Women’s Hospital, Christopher Bowlus, MD, UC Davis School of Medicine
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PSC Partners Research Programs - Stephen Rossi, PharmD, CSO, PSC Partners
- Questions & Answers
Moderator: Heather Francis, PhD, Indiana University School of Medicine
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Current Treatments: AASLD Guidance - Christopher Bowlus, MD, UC Davis School of Medicine
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What's New and on the Horizon for PSC Treatments - Gideon Hirschfield, FRCP, PhD, University of Toronto
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PSC Diet and Nutrition: Highlights and Insights - Jennifer Lai, MD, MBA, University of California, San Francisco
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ChilDReN Network: Prospective Observational Study of Primary Sclerosing Cholangitis in Children (PSC) - Cara Mack, MD, Medical College of Wisconsin
- Questions & Answers
Moderator: Christopher Bowlus, MD, UC Davis School of Medicine
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A Researcher's Story: The Impact of PSC Partners Grants and the Patient Organization - Heather Francis, PhD, Indiana University School of Medicine
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FDA and the Patient Voice in Drug Development - Frank Anania, MD, Food and Drug Administration
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A Perspective From the Scientific/Medical Advisory Board: Trends in PSC Research - Richard Green, MD, Northwestern University Feinberg School of Medicine
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PSC Transplant - Lisa Forman, MD, University of Colorado
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PSC Partners ICRNetwork: Building Community Involvement - Ricky Safer, CEO, PSC Partners, Joshua Korzenik, MD, Christopher Bowlus, MD
- Questions & Answers
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There's Still Time to Apply for a
PSC Partners Research Grant!
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Soon after you’ve completed the form, a member of the PSC Partners staff will be in touch with next steps and detailed application instructions.
If you have a research proposal idea, we hope to hear from you soon. Even if you're not applying this year, please help spread the word by forwarding this email to a researcher or colleague who may be interested.
Click links below for more information about our Research Grants Program:
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October is Global Diversity Awareness Month
Complete Our DEI in PSC Survey
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No matter your background or origin, YOUR specific information is essential in the search for treatments and a cure for PSC. If you are a person with PSC, post-transplant, or a parent/guardian of a pediatric PSC person (17 or under), we hope you will take 30 minutes or less to complete the PSC Partners DEI in PSC survey linked in the button below.
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Please complete this survey only once. Thanks!
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Register NOW for Upcoming
ZoomRoom Peer-to-Peer Gatherings
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Whether you've been before, or this will be your first time,
we hope you'll join your peers for these supportive, virtual discussions.
It's a great opportunity to speak with others who truly understand.
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Caregivers, Spouses, and Parents
Thursday, November 2
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Those Carrying on the Spirit
Tuesday, December 5
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Get Involved in Global PSC Awareness Day: October 29th
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Global PSC Awareness Day is October 29, 2023. It's a day when we spread awareness about our rare disease, and we need your help.
Here are ways you can show your support on October 29th:
- Visit the PSC Awareness page on our website to find graphics and other information to help you educate folks in your community
- Wear your PSC and/or PSC Partners gear to increase awareness
- Keep an eye on our social media pages, and share the facts and videos we post
- Create your own social media messages and post them on Oct. 29th
- Watch and share the PSC webinar roundtable discussion released that day
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Welcome to Sandi's
Circle
Sandi Pearlman's Annie Musical References
Remind Us That There's Always Hope, and We're Not Alone
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Sandi was a fan of musical theater. She often used the messages and songs from her favorite musicals to inspire herself and others. Here, she leans on the musical Annie to provide hope to the PSC community.
"Diagnosis of a rare disease which most people have never heard of is downright terrifying. Many of us feel as kicked about and alone as Little Orphan Annie. We've discovered that we are PSCers in a non-PSC world, and (we) feel it's practically a given that it's going to be a Hard-Knock Life. But, like any good musical, there's a silver lining, (and) The Sun'll Come Out Tomorrow. You can bet your bottom dollar on that, no wishing on a star needed. No matter what life throws at us, and we all know far too well that life can be a big, old bully at times, shining a light on each other and ourselves really does make all the difference."
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Folks who have been in the PSC Partners community remember Sandi Pearlman as a bright, positive light. Her insight, humor, and supportive presence were a real gift to those who knew her.
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Who is going to the AASLD Liver Meeting? We are! See you there. Patients and caregivers can attend in person or virtually for just $50. Click HERE for more information. Visit the Patient Advocate, Patient, Caregiver tab.
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Our Mission: PSC Partners Seeking a Cure drives research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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