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

ANNUAL CONFERENCE FOR PATIENTS AND CAREGIVERS

April 23-26, 2015
In conjunction with the Baylor University Medical Center
at the Omni Mandalay at Las Colinas, Irving, TX
Click to view the conference agenda
Click to view detailed speaker biographies

Thank you to Dr James Trotter and his colleagues for providing the excellent speakers who have broadened our perspectives and understanding of PSC. Our special thanks to the Baylor University Medical Center and our Long Term Premier Partner Illinois Tool Works.  We are also indebted to all our conference sponsors:

Long Term Premier Partner

Premier Partner

Patron Partner

Champion Sponsor

  • Sustaining Sponsor

    Doron and Ruth Blatt
    The Crowley and Walters Family
    The Grover Family Foundation
    - Deborah Grover Wente
    Don and Ricky Safer
    Ken and Patty Shepherd

  • Supporting Sponsor

    Jason and Jennifer Drasner
    Steve and Joanne Hatchett
    Axel and Karyn Rasmussen
    Fred Sabernick

  • Community Partner Sponsor

    The Browner Family
    Aubrey Goldstein and Caroline Vanneste
    The Holmgren Family
    Mary Kiani
    Robert and Myrna Kirkpatrick
    Todd and Erin Litton
    Allan and Karen Luks
    The Pearlman Family
    Mary Wells

Thanks also to our In-kind Conference Sponsors: Jeff and Reggie Belmont, John and Monica Crowley, Deep River Snacks, Donate Life, Joanne Hatchett, Husch Blackwell, Bob Berry/Irving Convention and Visitors Bureau,  ITW, John and Sue Lenihan, Jel-Sert, Johnson & Johnson, Kelly Shepherd, Robert Kirkpatrick/Lava Studio, Miller Toyota, Karen Pearlman, Soothing Scents, Starbucks. Our apologies if we have omitted anyone. We are truly thankful for all the community support!  

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. 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) and Kelly J. Shepherd Photography, unless otherwise stated.

Special thanks to John Lenihan of Lenicam Productions for recording and providing the General Session videos.

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.

Thursday, April 23

6:00 PM - 9:00 PM Casual Get Together - THE CELLAR RESTAURANT & BAR

FRIDAY April 24

Brunch, Fashion Show & Concert at Omni Mandalay Bay

Afternoon Social Hour and Snack

Dinner Reception and Entertainment

SATURDAY April 25

General Sessions (Morning/Afternoon) 

CLICK HERE to see a streaming video of General Session 1 (1 hour 41 minutes)

CLICK HERE to see a streaming video of General Session 2 (1 hour 19 minutes)

(Click title to see presentation if available.  Note that due to the size of some presentation files they may take considerable time to download before opening)

Breakout Sessions: (Friday and Saturday)

  • [Copyright Jacqueline G. O'Leary, all rights reserved, 13503 KB]
    Jacqueline G. O'Leary, MD, MPH, Medical Director Inpatient Liver and Transplant Unit, Medical Director Hepatology Research, Baylor University Medical Center Dallas

  • "PANEL: Planning for Transplant: Discussion of Financial, Social and Logistical Considerations"
    "PANEL: Planning for Transplant: Discussion of Financial, Social and Logistical Considerations"

    Moderator: Richard Ayuen - Living Donor, Parent of Post-Transplant PSCer
    Panelists: Precious Young - Manager Transplant Patient Access Services Baylor Health Care System, Jeanne Hays - Post-Transplant PSCer, Patty Shepherd - Parent of Post-Transplant PSCer

  • [Copyright Ashish S. Patel, all rights reserved, 13503 KB]
    Ashish S. Patel, Associate Professor - UT Southwestern Medical Center, Director - Southwestern Medical Center for Pediatric IBD, Children's Medical Center of Dallas

  • [Copyright Apurva Trivedi, all rights reserved, 6073 KB]
    Apurva Trivedi, MD, Soctt & White Healthcare

  • "PANEL: How to Manage PSC as a Family Unit"
    "PANEL: How to Manage PSC as a Family Unit"

    Moderators: Tracey Goodnight - LMSW, ACM, Baylor All Saints Hospital, Linda Huante - Liver transplant recipient
    Panelists: Eve Jedrzejewska - Parent of PSC Patient, Tim Wholey - PSC Patient

  • [Copyright Jeremy Burke, all rights reserved, 862 KB]
    Jeremy Burke, DH, ALHC, Learning Consultant - Aetna Group Insurance

  • [Copyright Paul R. Tarnasky, all rights reserved, 6453 KB]
    Paul R. Tarnasky, MD, Director - Methodist Dallas Gastroenterology Fellowship, Medical Director - Methodist Digestive Institute

  • "Interactive T'ai Chi Chih Session"
    "Interactive T'ai Chi Chih Session"

    Instructor: Cindy L. Dunn, FNAO

  • "Panel of PSCers: Interactive Question and Answer Session"
    "Panel of PSCers: Interactive Question and Answer Session"

    Moderator - Fred Sabernick, Post-Transplant PSCer, PSC Partners Board of Directors
    Panelists: Matt Ayuen - Post Transplant PSCer, Linda Waters - PSC Patient, Heather Whiteman - PSC Patient, Bill Wise - PSC Patient

  • [Copyright Gred dePrisco, all rights reserved, 33345 KB]
    Greg dePrisco, MD, Diagnostic Radiologist

  • [Copyright Tiffany Anthony, all rights reserved, 9905 KB]
    Tiffany Anthony, MD, Baylor University Medical Center, Baylor Simmons Transplant Institute, Abdominal Transplant Surgeon, LDLT Surgeon, Director - Robotic Donor Nephrectomy, Clinical Faculty - Texas A&M Medical School

  • "PANEL: A Multidisciplinary Approach to Pediatric PSC: Working with your Dietician, Social Worker, and Psychologist"
    "PANEL: A Multidisciplinary Approach to Pediatric PSC: Working with your Dietician, Social Worker, and Psychologist"

    Moderators: Kirstin Brown - CSW, Children's Medical Center, Dallas, Jill Rockwell - RD, CSP, LD, CNSC, Children's Medical Center, Dallas, Corrine M. Anton - PHD, Pediatric Health Psychology Postdoctoral Fellow, Children's Medical Center, Dallas

  • "Teen Session ... Every Question is Fair Game" ***Teens only ***
    "Teen Session ... Every Question is Fair Game" ***Teens only ***

    Moderator: Amal Aqul, MD, Assistant Professor of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, UT Southwestern Medical Center Children's Health Dallas

  • [Copyright Jeffrey Weinstein, all rights reserved, 5075 KB]
    Jeffrey Weinstein, MD, Medical Director of Liver Transplantion and Hepatobiliary Services, The Liver Institute, Methodist Dallas

  • "PSC and the Drug Approval Process"
    "PSC and the Drug Approval Process"

    David N. Assis, MD, Assistant Professor of Medicine, Yale University School of Medicine, Section of Digestive Diseases

  • [Copyright Mike Pearlman, all rights reserved, 237 KB]
    Moderator: Mike Pearlman, JD, PSC Parent, PSC Partners Board of Directors
    Panelists: Sharon Nanz - Parent of Post-Transplant PSCer, Carla Schwartz - Spouse of PSCer, Kelly Shepherd - Sibling of Post-Transplant PSCer, Mary Vyas - Parent of PSCer

  • "Bone Health in Primary Sclerosing Cholangitis"
    "Bone Health in Primary Sclerosing Cholangitis"

    Naim Maalouf, MD, Associate Professor of Medicine, Center for Mineral Metabolism, University of Texas Southwestern Medical Center

  • [Copyright Sumeet K. Asrani, all rights reserved, 1334 KB]
    Sumeet K. Asrani, MD, MSc, Baylor University Medical Center in Dallas

  • [Copyright James Trotter, all rights reserved, 5302 KB]
    James Trotter, MD, Director, General and Transplant Hepatology, Baylor Health Care System

  • "Therapeutic Challenges in Pediatric and Adolescent PSC"
    "Therapeutic Challenges in Pediatric and Adolescent PSC"

    Amal Aqul, MD, Assistant Professor of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, UT Southwestern Medical Center Children's Health Dallas
    Dev M. Desai, MD, PhD, FACS, Regents Distinguished Scholar in Medical Research, Associate Professor of Surgery, Pediatrics and Immunology, Chief of Pediatric Transplantation, UT Southwestern

  • [Copyright Jeanette Hasse, all rights reserved, 2946 KB]
    Jeanette Hasse, PhD, RDN, LD, FADA, CNSC, Transplant Nutrition Manager, Baylor Simmons Transplant Institute, Baylor University Medical Center, Dallas

  • "PANEL: Strategies for Coping with Life with PSC"
    "PANEL: Strategies for Coping with Life with PSC"

    Moderators: Kerrie Goldsmith, RN, Parent of Post-Transplant PSCer, Maggie Marek, LCSW, ACM, Social Worker/Transplant Services, Baylor All Saints Medical Center Fort Worth
    Panelists: Monica Crowley, PSC Partners Seeking a Cure Board Member, Spouse of PSCer, Chelsea Yeager, PSCer, Bill Wise, PSCer

  • [Copyright Caitriona Ryan, all rights reserved 3854 KB]
    Caitriona Ryan, MD, Vice Chair - Department of Dermatology, Baylor University Medical Center, Dallas

  • "FMLA: Finding your Way Through the Family and Medical Leave Act and Employment Related Issues"
    "FMLA: Finding your Way Through the Family and Medical Leave Act and Employment Related Issues"

    Tiffany Rotondo, PHR, Corporate Human Resources Generalist, The Jel Sert Company

  • Robert L. Fine, MD, FACP, FAAHPM, Cilinical Director, Office of Clinic Ethics and Palliative Care, Baylor Health System
    Joanne Hatchett, RN, FNP, ACHPN, PSC Partners Seeking a Cure Board Member, Parent of PSCer

  • "Fundraising Basics"
    "Fundraising Basics"

    Ken Shepherd, PSC Partners Seeking a Cure Board Chairman, Parent of Post-Transplant PSCer
    Chris Browner, PSC Partners Seeking a Cure Board Member, Parent of PSCer

BANQUET DINNER: BOOTS, BIG HAIR AND BLING ... AND KARAOKE!

SUNDAY April 26

Buffet Breakfast 

  • General Session
    • Announcements
    • PSC Partners Treasurer's Report
    • Foundation Updates
  • Breakout sessions:
    • Teen PSCers
    • Female  PSCers in their 20s/30s
    • Male PSCers in their 20s/30s
    • Female PSCers Groups A & B
    • Male PSCers Groups A & B
    • Post-Transplant PSCers
    • Parents of Pediatric PSCers (17 and under)
    • Parents of Young Adult PSCers (18-25 years old) Groups A, B & C
    • Parents of Adult PSCers (26 and up) Groups A & B
    • Spouses/Caregivers of PSCers Groups A & B
    • Siblings & Other Caregivers of PSCers  Groups A, B & C
    • Caregivers Coping with Loss & Carrying on the Spirit

Break/snacks

Group Session Feedback Presentations
Closing Remarks - Ricky Safer, PSC Partners Seeking a Cure

June 23-26, 2016 : New Haven, CT

HULK and TIRA want to see everyone at the PSC Partners 12th Annual Conference next year!

Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure. Find information about clinical trials.