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2017 Conference

2017 Conference

PSC Partners Seeking a Cure’s 13th annual conference for PSC patients and caregivers was held in Cleveland, Ohio from June 23-25, 2017  at the Intercontinental Hotel in conjunction with the Cleveland Clinic Transplant Center and Digestive and Surgery Institute.

Quick Links
Conference agenda
Detailed speaker biographies
Friday Breakout Sessions
Saturday General Sessions (with video)
Sunday Peer Group Sessions and Wrapup

Thank you to Dr. Bijan Eghtesad and his colleagues at the Cleveland Clinic for providing the excellent speakers who broadened our perspectives and understanding of PSC. Our special thanks to the Cleveland Clinic Transplant Center and Digestive and Surgery Institute and our Long Term Premier Partner Illinois Tool Works. We are also indebted to all our conference sponsors.  We thank all the members of our community who generously donated their time and funds to the PSC Partners Seeking a Cure organization.

Photograph acknowledgements to Kelly J. Shepherd Photography

Pre-Conference Preparations

The A-Team at work!

Brunch at Cleveland Botanical Garden

Friday Afternoon Sessions
Michael Roizen Preventive Medicine and PSC (General Session)
Carlos Romero-Marrero The Basics of PSC (6 MB)
Moderator: Koji Hashimoto
Panelists Mahwish Ahmad, Annette Humberson, Donna Ferchill
Comparing Options: Cadaveric and Living Donor Liver Transplant  Medical (2 MB) Social (3 MB)
Katherine Lamparyk Pediatric PSC and AIH/IBD: Navigating Social and Academic Relationships (0.2 MB)
Cindy Dunn Interactive Session: T’ai Chi Chih
Moderator: Uma Permi
Panelists: Elaine Bishop, Monika Aldarondo, and Jennifer Sparks
Issues for Female PSCers in their 20/30’s (0.4 MB)
Moderator: Kareem Abu-Elmagd
Panelists: Bo Shen, Tracy Hull, Megan Costedio, Anthony DeRoss
IBD and PSC: Pre- and Post-Transplant Issues
Moderator: K. V. Narayanan Menon
Panelists: Madhu Sanaka, Federico Aucejo, Dustin Thompson
PSC and Cholangiocarcinoma (5 MB): Multidisciplinary Approach to Treatment (ERCP, Radiology Options (2 MB), Surgery)
Moderator: Wes Hendrix
Panelists: Scott Bea, Sharon Nanz, Jennifer Sims, Caroline Vanneste
PSC Caregivers: Coping with the Stress of Living with PSC
Jeremy Burke Disability Benefits: What to Expect When You Can No Longer Work (6 MB)
Lisa Pedicone, Carol Burke Is a Clinical Trial Right for Me? (6 MB)
Clare McMillan Social Media Workshop
William Carey Interpreting Your Test Results (5 MB)
Moderator: Bijan Eghtesad
Panelists: K. V. Narayanan, Jessica Bollinger, April Waby, Fred Sabernick, John Crowley, Jeanne Hays
Post-Transplant Issues (41 MB)
Moderators: Annette Humberson and Donna Ferchill
Panelists: Joanne Grieme, Tom Davenport, Tawny Blum
Pre-Transplant Considerations (Medical 1 MB) (Social 1 MB)
Moderator: Barbara Kaplan
Panelists: Vera Hupertz, Kadakkal Radhakrishnan, Bette Klein
Medical Issues for Pediatric PSCers, Including Transition to Adult Care (8 MB)
Ashley Neuman Mindfulness and Meditation (13 MB)
Natesh Parashurama  Current State of Liver Stem Cells/
Regenerative Medicine Research:
An Update and Implications (80 MB)
Stu Barnett Financial Planning for PSC Families
Moderator: Tim Wholey
Panelists: Scott Bea, Travis Stoltzfus, Linda Waters
PSC Patients: Coping with the Stress of Living with PSC
Bo Shen, Anne Feldman Traditional and Complementary Drug Therapies for PSC and IBD
Lori Mahajan, Jessica Philpott Teens: Every Question Is Fair Game – PSC Patient Q&A (9 MB)
Friday Welcome Dinner

Saturday June 24

General Session I
Moderator Bijan Ehtesad, MD
Alok Vij, MD
Harneet Walia, MD
Management of PSC Symptoms
Pruritus/Dermatology Slides (0.1 MB)
Insomnia/Sleep Disorders
Sunguk Jang, MD Intervention in PSC: Perspectives from ERCP Provider
Watch Video    Download Slides  (5.1 MB)
Carol Santalucia How to Communicate Effectively with  your Physician
Watch Video    Download Slides (1.4 MB)
Eghtesad, Vij, Walia,
Jang, Santalucia
Question and Answer – Panel Discussion
Watch Video
General Session II
Moderator William Carey, MD
Mathilde Pioro, MD Bone Health and Maintaining Fitness
Watch Video    Download Slides (6.8 MB)
Srinivasan Dasarathy
Nutrition and PSC
Watch Video    Download Slides (9.3 MB)
Bret Lashner, MD Fecal Microbiota Transplantation for IBD
Watch Video    Download Slides  (6.6 MB)
Carey, Pioro,
Dasarathy, Lashner,
Question and Answer – Panel Discussion
Watch Video
General Session III – Round 1
Moderator Ricky Safer, CEO PSC Partners Seeking a Cure
Veronica Miller, PhD The Forum Collaboration Model: Unique Opportunity in PSC
Watch Video    Download Slides (0.2 MB)
Chris Bowlus, MD PSC Partners Sponsored International Research
Watch Video    Download Slides (17.6 MB)
Safer, Miller, Bowlus Question and Answer – Panel Discussion
Watch Video
General Session III – Round 2
Moderator Narayanan Menon, MD
Donna Ferchill, RN
Julie Plescia, RN
UNOS Perspective
Watch Video    Download Slides (0.1 MB)
Aunna Herbst, DO Functional Medicine: A Different Perspective for Patients
Watch Video
Menon, Ferchill, Plescia, Herbst Question and Answer – Panel Discussion
Watch Video
Banquet Dinner Theme: Rock and Roll!

Sunday June 25

Peer Groups, Feedback, and Wrap Up
Thanks to all that made the 2017 Conference a huge success!

2018 Annual Conference

We are pleased to announce that PSC Partners Seeking a Cure’s 14th annual conference for PSC patients and caregivers will take place in Sacramento, California at the downtown Sheraton Grand Hotel from June 22-24, 2018. The conference will be held in partnership with the University of California, Davis Medical Center. Check back at for more details!