Working together to provide research, education,

and support for people affected by Primary Sclerosing Cholangitis

 

ANNUAL CONFERENCE FOR PATIENTS AND CAREGIVERS

April 26-28, 2013

In conjunction with UPMC at the Doubletree Hotel and Suites Downtown, Pittsburgh, PA

Thank you to Dr. Kapil Chopra and his colleagues for providing the excellent speakers who have broadened our perspectives and understanding of PSC. Our thanks to the University of Pittsburgh Medical Center, our 2013 conference Platinum Sponsor and ITW our Diamond Sponsor.  We are also indebted to all our conference sponsors:

Diamond Sponsors

 

 

Platinum Sponsors

Gold level sponsors

Dike and Rilee Ajiri
Jason and Jennifer Drasner
Steve and Joanne Grieme
Don and Ricky Safer
Ken and Patty Shepherd
Toyota Motor Sales USA

Abbvie
Anonymous Donor

Silver level sponsors

Genentech
Steve and Joanne Hatchett
The Michael Pearlman Family

Bronze level sponsors

Aubrey Goldstein and Caroline Vanneste
Peter and Helena Holmgren
Sigma-Tau Pharmaceuticals

We also thank all the members of our community 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. Please see the details of our 2013 patient education conference by viewing the PowerPoint presentations which are posted here. Summaries of the general sessions are available in our post-conference newsletter edition. For more information about PSC Partners Seeking a Cure, go to www.pscpartners.org and click on “Join our Mailing List” button to receive news and information.

Photograph acknowledgements to Karen Pearlman, (K Pearlman Photography), unless otherwise stated.

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.

A slide show of conference photographs by K Pearlman Photography is available here.

Thursday, April 25

6:00 PM - 9:00 PM Casual Get Together VILLA REALE PIZZERIA

             

FRIDAY April 26

Pre-conference Brunch Cruise - GATEWAY CLIPPER SHIP

            

Optional Afternoon Activities

vv pic

Affordable Care Act and Its Impact on People with Serious Chronic Diseases

Victoria Veltri, JD, LLM, State Healthcare Advocate

Office of the Healthcare Advocate, Hartford, CT

Interactive T’ai Chi Session – T’ai Chi for Health and Healing                                                                          

David Clippinger, PhD, Director of Still Mountain T’ai Chi & Chi Kung

Registration Newcomer Orientation Welcome Reception
                    

SATURDAY April 27 (click title to see presentation)

Buffet Breakfast

SESSION I  Adam Slivka, MD, PhD, Moderator
Professor of Medicine, University of Pittsburgh Medical Center

Presentation 1: "Natural History of PSC"  [Copyright Kapil Chopra, all rights reserved, 456 KB].
Kapil Chopra, MD, Director of Hepatology, Associate Professor of Medicine, University of Pittsburgh Medical Center

Presentation 2: "Current Concepts and Management of the Pruritus of Cholestasis" [Copyright Nora Bergassa, all rights reserved, 807 KB].
Nora Bergasa, MD, Chief, Department of Medicine, Metropolitan Hospital Center, New York, NY, and Professor of Medicine, NY Medical College, Valhalla, NY

Presentation 3: "MELD Issues/The Unknowns about How UNOS Works" [Copyright Christopher Hughes, all rights reserved, 2525 KB].
Christopher Hughes, MD, Associate Professor of Surgery, Surgical Director, Liver Transplantation Starzl Transplant Institute, University of Pittsburgh Medical Center

Questions and Answers Panel: Drs. Chopra, Bergasa and Hughes
   

SESSION II  Kapil Chopra, MD, Moderator
Director of Hepatology, Associate Professor of Medicine,
University of Pittsburgh Medical Center

Presentation 4: "New Advances in the Evaluation of Biliary Strictures" [Copyright Adam Slivka, all rights reserved, 1280 KB]
Adam Slivka, MD, PhD, Professor of Medicine, University of Pittsburgh Medical Center

Presentation 5: "Metabolic Bone Disease in PSC Patients" (presentation unavailable)
Mara Horwitz, MD, Associate Professor of Medicine, Division of Endocrinology, University of Pittsburgh School of Medicine

Presentation 6: "Treatment with UDCA in PSC: What Do We Learn from the Scandinavian Urso Study?" [Copyright Annika Bergquist, all rights reserved, 377 KB]
Annika Bergquist, MD, PhD, Associate Professor, Karolinska University Hospital, Karolinska Institutet, Stockholm Sweden

Questions and Answers Panel: Drs. Slivka, Horwitz and Bergquist

Lunch

Breakout Sessions:

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"PSC and Your Liver: How to Keep Your Liver Healthy: Myths & Reality" [Copyright all rights reserved, 372 KB]  Kapil Chopra, MD, Director of Hepatology, Associate Professor of Medicine, University of Pittsburgh Medical Center

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"Medical and Nutritional Management of IBD" [Copyright all rights reserved, 2605 KB]  David Binion, MD, Director, Nutrition Support Service; Co-Director, Inflammatory Bowel Disease Center; Director, Translational IBD Research, Division of Gastroenterology, Hepatology and Nutrition, UPMC Presbyterian Hospital; Professor of Medicine and Professor of Clinical and Translational Science, University of Pittsburgh School of Medicine

Dr. Benjamin L. Shneider - Director, Pediatric Hepatology Center

"PSC in Children-The Same Disease?" (presentation unavailable) Benjamin Shneider, MD, Professor of Pediatrics, University of Pittsburgh School of Medicine, Director of Pediatric Hepatology, Children's Hospital of Pittsburgh of UPMC

Christohper Hughes, MD

"Transplant Surgical Considerations in PSC" [Copyright all rights reserved, 4793 KB]  Christopher Hughes, MD, Associate Professor of Surgery, Surgical Director Liver Transplantation, Starzl Transplant Institute, University of Pittsburgh Medical Center

Alison Jazwinski, MD

"How to Navigate the Healthcare System and Maximize the Patient-Physician Relationship" [Copyright all rights reserved, 279 KB] Alison Jazwinski, MD, MHS, Assistant Professor, Division of Gastroenterology, Hepatology and Nutrition, University of Pittsburgh Medical Center

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"Interpreting Your Test Results" [Copyright all rights reserved, 1178 KB]  Shahid Malik, MD, Clinical Assistant Professor of Medicine, Associate Program Director, Transplant Hepatology Fellowship, Division of Gastroenterology, Hepatology and Nutrition, University of Pittsburgh Medical Center

"Long Term Disability: Understanding Your Options and Benefits" [Copyright all rights reserved, 769 KB]  Jeremy Burke, DM, ALHC, Learning Consultant Aetna Disability Benefits

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"Exciting Research at UPMC"

"Training Your Brain to Help Your Body Cope with GI Problems"  [Copyright all rights reserved, 1242 KB]  Eva Szigethy, MD, PhD, Associate Professor of Psychiatry, Pediatrics and Medicine, Medical Director of Visceral Inflammation and Pain Center, Division of Gastroenterology, University of Pittsburgh and Director, Medical Coping Clinic, Department of Pediatric Gastroenterology, Pittsburgh Children’s Hospital

"I Was Referred for Liver Transplant: Now What?" [Copyright all rights reserved, 525 KB] Stacey Walsh, RN, CCTC, Clinical Transplant Coordinator, Thomas E. Starzl Transplantation Institute, University of Pittsburgh Medical Center.  Jennifer Hollenberger, MSW, LSW, Clinical Social Worker, University of Pittsburgh Medical Center

Abhinav Humar, MD

"Living Donor Liver Transplant as an Option"  [Copyright all rights reserved, 2537 KB] Abhinav Humar, MD, Thomas E. Starzl Professor in Transplantation Surgery, Clinical Director of Starzl Transplant Institute

George V. Mazariegos, MS, FACS, chief, Pediatric Transplantation

"Transplant in Pediatric Patients: Long Term Outcomes-What You Need to Know (For Pediatric PSCer Parents & Caregivers)" [Copyright all rights reserved, 2230 KB] George Mazariegos, MD, FAC, Director of Pediatric Transplantation, Jamie Lee Curtis Professor of Surgery and Critical Care Medicine, Hillman Center for Pediatric Transplantation, Children's Hospital of Pittsburgh of University of Pittsburgh Medical Center

"Genetics in PSC and UC: A European Perspective" [Copyright all rights reserved, 807 KB] Annika Bergquist, MD, PhD, Associate Professor, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden

"Improving Quality of Life in PSC: Targeting Pain, Sleep and Fatigue"[Copyright all rights reserved, 1850 KB]  Eva Szigethy, MD, PhD, Associate Professor of Psychiatry, Pediatrics and Medicine, Medical Director of Visceral Inflammation and Pain Center, Division of Gastroenterology, University of Pittsburgh and Director, Medical Coping Clinic, Department of Pediatric Gastroenterology, Pittsburgh Children’s Hospital

Beverly Kosmach Park, MSN - Clinical Nurse Specialist

"Growing Up with a Chronic Illness: Challenges and Strategies for Successful Transition to Adult Care (For Pediatric and Teen Parents and Caregivers)" [Copyright all rights reserved, 547 KB] Beverly Kosmach-Park, DNP, Clinical Nurse Specialist, Department of Transplant Surgery, Children's Hospital of Pittsburgh

"Caregivers: Helping Us Help Others" [Copyright all rights reserved, 96 KB]Mike Pearlman , JD, PSC Parent, Panel Moderator

Panelists: Richard Ayuen, Eileen Pearlman, Karen Rountree, Scott Clouser

"Life After Liver Transplant"  [Copyright all rights reserved, 70 KB] Mimi Funovits, RN, BS, CCTC, Panel Moderator, Clinical Transplant Coordinator II, Thomas E. Starzl Transplantation Institute, UPMC Montefiore Hospital

Panelists: Todd Clouser, Fred Sabernick, Alison Collins

Breakout Sessions (presentation materials not available)

"FMLA: Finding Your Way Through The Family And Medical Leave Act And Other Employment Related Issues" Tiffany Rotondo, PHR, Corporate Human Resources Generalist, The Jel Sert Company

"Panel of PSCers: Interactive Question and Answer Session" Sandi Pearlman, Community Relations Chair, PSC Partners Seeking a Cure, PSC Patient, Panel Moderator

Panelists: Corrine Perrett, Matt Ayuen, Arne Myrabo, Gail Larson

"Make a Difference: Effective Fundraising Made Easy" Ken Shepherd, Managing Partner, Miller Toyota & Warrenton Toyota, PSC Partners Board Member, PSC Parent

Wrap-up, Don and Ricky Safer

Banquet Dinner

SUNDAY April 28

 Continental Breakfast 

General Session

PSC Partners Foundation Report

Announcements

Foundation Updates

Breakout sessions:

Teen PSCers
Female  PSCers in their 20s/30s

Male PSCers in their 20s/30s

Female PSCers
Male PSCers

Post-Transplant PSCers

Parents of Pediatric PSCers

Parents of Adult PSCers

Spouses/Caregivers of PSCers

Siblings & Other Caregivers of PSCers  

Break/snacks

Closing Remarks - Ricky Safer, PSC Partners Seeking a Cure