Working together to provide research, education, and support for people affected by Primary Sclerosing Cholangitis

CONFERENCE FOR PATIENTS AND CAREGIVERS

May 14-16, 2010

Marriott Hartford Downtown, Hartford CT, USA

We’d like to thank the physicians at The Liver Center of Yale University School of Medicine, especially Dr. James Boyer, Dr. Tamar Taddei, Dr. Mario Strazzabosco, and Dr. Pramod Mistry, who have worked closely with us in planning the conference.  The Liver Center is also one of our 2010 conference sponsors.  Many thanks as well to all our wonderful speakers who broaden our perspectives and understanding of PSC.  We are also indebted to our conference sponsors:

Premier Platinum level

Gold level

Silver level

Bronze level

With special thanks to:

CT Division of the American Liver Foundation
Starbucks at City Place
Gilead
Sam Baytar
The Long Family
Arlene Ghent
The Parry Family
Karen Pearlman Photography
Sandi Pearlman

We also thank all those members of the PSC support group, and their family, friends and caregivers, who have generously donated their time and funds to the PSC Partners Seeking a Cure foundation.

PSC Partners Seeking a Cure is a 501(c)3 nonprofit foundation that endeavors to find a cure for Primary Sclerosing Cholangitis. Today this liver disease has no specific treatment. PSC is affecting the lives of too many people including young children, college students, mothers, fathers, and grandparents. With no treatment or cure, people with this disease are suffering and dying while awaiting the uncertainty of a liver transplant. Little is known about this disease and its course is hard to predict. What isn't hard to predict is the heart break the next family will experience when PSC strikes them. Patients and caregivers need support and information.

Many members of the Yahoo! PSC-support group and the Facebook group PSC Partners Seeking a Cure are also very active with PSC Partners Seeking a Cure. Partners is a non-profit foundation that holds annual conferences for patient education,  raises funds for PSC research and promotes organ donor awareness. For more information go to http://www.pscpartners.org and click on their "Join Our Mailing List" button to receive news and information.

Note to Readers:

PSC Partners does not provide specific medical advice, is not engaged in providing medical or professional services and does not endorse any medical or professional service obtained through information provided in this presentation.  Use of this presentation does not replace medical consultations with a qualified health or medical professional to meet the health and medical needs of you or a loved one.

Conference photographs courtesy of Karen Pearlman, (K Pearlman Photography)

All photos visible below courtesy of Arne Myrabo

FRIDAY MAY 14, Pre-conference activities

Pre-Conference Events: Complimentary Brunch at the Butler-McCook House (1782) which is the oldest surviving building in Hartford, and portrays the life of four generations of the Butler and Mc Cook families with its original furnishings, art and antique collections.  Also, an interactive introduction to complementary therapies (held at the Marriott) by Doctor of Naturopathic Medicine Ather Ali, Assistant Director of Integrative Medicine, Prevention Research Center Associate Research Scientist, Department of Pediatrics Yale University School of Medicine -  "Complementary, Alternative, and Integrative Medicine: Introduction and Landscape".  (499 KB) [Copyright Ather Ali, all rights reserved]

This is a new program in 2010 which is targeted for both PSCers and caregivers. Stress-relieving activities such as meditation, yoga, Tai Chi, etc., and also to learn how to incorporate exercise into your life, no matter what stage of the disease you may be experiencing presently.  Photos available at Brunch & afternoon.

Welcome Reception and evening activities: Friday Evening (and food)

SATURDAY MAY 15 (click to see presentation/enlarged photo)

Saturday Photos

Opening Remarks - Don and Ricky Safer, PSC Partners Seeking a Cure Foundation

Welcome & Meeting Objectives - Dr. James Boyer, Ensign Professor of Medicine, Emeritus Director, Liver Center, Department of Medicine, Yale University School of Medicine

Breakout Sessions:

• Special Topics for 20s/30s Females - Dr. Tamar Taddei, Assistant Professor of Medicine, Section of Digestive Diseases, Yale University School of Medicine (no presentation)
• Special Topics for 20s/30s Males - Dr. Dwain Fehon, Assistant Professor, Department of Psychiatry, Yale University School of Medicine (no presentation)
• The Role of Good Nutrition in PSC - Erin Paice, Certified Dietician, Registered Dietician-Nutritionist, Transplant Dietician, Nutrition Department, Hartford Hospital (508 KB) [Copyright Erin Paice, all rights reserved]
• Surgical and Transplant Options for PSC - Dr. David Hull, Director of Transplantation, Hartford Hospital
• Pediatric and Adolescent PSC - Dr. Karan Emerick, Associate Professor of Pediatrics, University of Connecticut School of Medicine, Director of Hepatology, Division of Pediatric Digestive Diseases, Connecticut Children’s Medical Center (4.7 MB) [Copyright Karan Emerick, all rights reserved]
• The Transplant Experience: Interactive Session for Post-Transplant PSCers - Dr. Aubrey Goldstein, PSC Partners Scientific/Medical Advisory Committee Member (no presentation)
• Treatment Issues for PSC Patients with IBD - Dr. Deborah Proctor, Professor of Medicine, Medical Director, Inflammatory Bowel Disease Program, Yale University School of Medicine
• Patients as Partners: How You Can Contribute to the Coming Era of Personalized Medicine - Dr. Tom Ullman, Director, Center for IBD and Associate Professor of Medicine, The Mount Sinai School of Medicine
• Oncologic Complications of PSC - Dr. Mario Strazzabosco, Professor and Director, Yale Liver Cancer Program, Yale University School of Medicine
• Future Plans for the Norwegian Research Center - Dr. Trine Folseraas, Norwegian PSC Center, Medical Department, Rikshospitalet, Oslo (1222 KB) [Copyright Trine Folseraas, all rights reserved]
• Endoscopic Diagnosis and Management of PSC - Dr. Priya Jamidar, Professor of Medicine, Associate Section Chief, Director of Endoscopy, Section of Digestive Diseases, Yale University School of Medicine
• Patient Perspective on the Transplant Experience/From Pre-Transplant through Post-Transplant - Aubrey Goldstein moderator/Panelists:  Melanie Scherder, Tom Butler, Alison Cubbellotti and Todd Clouser.  (no presentation)
• Coping with PSC for PSC Patients - Dr. Dwain Fehon, Assistant Professor, Department of Psychiatry, Yale University School of Medicine (2718 KB) [Copyright Dwain Fehon, all rights reserved]
• Know Your Rights: An Overview of Disability and Insurance Law - compiled by Jennifer Jaff of Advocacy for Patients with Chronic Illness, Inc., and presented by Becky Long, PSC Partners' Legal Counsel (no presentation)
• Adult and Pediatric PSC: Who and When to Transplant (MELD Score Advocacy) - Dr. Pramod Mistry, Chief, Pediatric Gastroenterology and Hepatology, Yale University School of Medicine and  Dr. Tamar Taddei, Assistant Professor of Medicine, Section of Digestive Diseases, Yale University School of Medicine
• Living with PSC: Stories of Inspiration - Don Safer moderator/Panelists:  Stephen Harris, Carter Gill, Ruth Blatt, Sandi Pearlman, Nicklas Holmgren (no presentation)
• Coping with PSC for Caregivers - Dr. Dwain Fehon, Assistant Professor, Department of Psychiatry, Yale University School of Medicine (2291 KB) [Copyright Dwain Fehon, all rights reserved]

Wrap-up, Don and Ricky Safer

Banquet Dinner featuring Sea Tea Improv comedy performers (excellent dinner sponsored by Illinois Tool Works)

Saturday Evening photographs

SUNDAY MAY 16

Buffet Breakfast

Open Forum

Group Sessions in Breakout Rooms (Male PSCers/Female PSCers/Parents of pediatric PSCers/Parents of adult PSCers/Spouses and other caregivers of PSCers/Post-transplant PSCers/PSC teenagers/PSCers in their 20’s & 30’s)

Break/Snacks

Open Forum Reconvenes - Feedback from Group Sessions

Closing Remarks – Don and Ricky Safer, PSC Partners Seeking a Cure Foundation