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.
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 VideoDownload Slides (5.1 MB) |
| Carol Santalucia |
How to Communicate Effectively with your Physician Watch VideoDownload 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 MD |
Nutrition and PSC Watch VideoDownload Slides (9.3 MB) |
| Bret Lashner, MD |
Fecal Microbiota Transplantation for IBD Watch VideoDownload 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 VideoDownload Slides (0.2 MB) |
| Chris Bowlus, MD |
PSC Partners Sponsored International Research Watch VideoDownload 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 VideoDownload 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!
KARAOKE!
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 pscpartners.org for more details!
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