PSC Partners Ten Year Anniversary Logo

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

Illinois Tool Works

 

Premier Partner

Shire Logo

Patron Partner

 Gilead logo

Champion SponsorBaylor Logo

Intercept Logo

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!  

Red Rocks Park Group Photo

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 PhotographyK 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

    Garcia's Mexican Restaurant Photo     Garcia's Mexican Restaurant Photo     Garcia's Mexican Restaurant Photo

FRIDAY April 24

Brunch, Fashion Show & Concert at Omni Mandalay Bay

   Red Rocks Park Photo     Guitarist     Line Dancing

Afternoon Social Hour and Snack

    Chris Klug Presentation Photo     Chris Klug Presentation Photo      Chris Klug Presentation Photo

Dinner Reception and Entertainment

    Friday Dinner Photo     Friday Dinner Photo     Friday Dinner Photo   Friday Dinner Photo


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)

James Trotter

GENERAL SESSION I  James Trotter, MD, Moderator
Director, General and Transplant Hepatology, Baylor Health Care System

Stevan A. Gonzalez

Presentation 1: "General Health for Liver Patients: Top 10 Secrets [Copyright Stevan A. Gonzalez, all rights reserved, 733 KB].
Stevan A. Gonzalez, MD, MS,  Attending Physician, Division of Hepatology, Simmons Transplant Institute, Baylor All Saints Medical Center, Fort Worth, Texas

Peter Mannon

Presentation 2: "The Human Microbiome: PSC, IBD, and the Gut-Liver Axis  [Copyright Peter Mannon, all rights reserved, 1544 KB].
Peter Mannon, MD, Director UAB IBD Center, Professor of Medicine and Microbiology, University of Alabama at Birmingham

David N. Assis

Presentation 3: "Advances in PSC Research and Future Directions [Copyright David N. Assis, all rights reserved, 1712 KB].
David N. Assis, MD, Assistant Professor of Medicine, Yale University School of Medicine, Section of Digestive Diseases

Panel Photo

Questions and Answers Panel: Drs. Gonzalez, Mannon and Assis
   

Jeffrey Weinstein

GENERAL SESSION II  Jeffrey Weinstein, MD, Moderator
Medical Director of Liver Transplantion and Hepatobiliary Services, The Liver Institute, Methodist Dallas

James Trotter

Presentation 1: "MELD and UNOS"  [Copyright James Trotter, all rights reserved, 13225 KB]
James Trotter, MD,  Director, General and Transplant Hepatology, Baylor Health Care System

Giuliano Testa

Presentation 2: "Living Donor Transplant in PSC Patients"  [Copyright Giuliano Testa, all rights reserved, 4517 KB]
Giuliano Testa, MD, FACS, MBA, Director of Living Donor Liver Transplant, Surgical Director Living Donor Liver Transplantation, Annette C. and Harold C. Simmons Transplant Institute, Baylor Medical Center

Jeanette Haas

Presentation 3: "Nutrition & PSC: Facts and Fallacies [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 Photo

Questions and Answers Panel: Drs. Trotter, Testa and Hasse

Breakout Sessions: (Friday and Saturday)

Jacqueline G. O'Leary

"The ABCs of PSC [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 photo

"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

Ashish S. Patel

"PSC in Pediatric Inflammatory Bowel Disease: Current and Future Implications" [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

Apurva Trivedi

"Fecal Microbiota Transplantation [Copyright Apurva Trivedi, all rights reserved, 6073 KB]
 Apurva Trivedi, MD, Soctt & White Healthcare

Themistocles Dassopoulus

"Managing Coexistent Inflammatory Bowel Disease in Patients with PSC" [Copyright Themistocles Dassopoulus, all rights reserved, 2671 KB]
Themistocles Dassopoulus, MD, Director - Baylor Center for Inflammatory Bowel Disease

photo not available

"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

Jeremy Burke

"Disability Benefits: What to Expect When You Can No Longer Work" [Copyright Jeremy Burke, all rights reserved, 862 KB]
Jeremy Burke, DH, ALHC, Learning Consultant - Aetna Group Insurance

Paul R. Tarnasky

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

Cindy L. Dunn

"Interactive T'ai Chi Chih Session"
Instructor: Cindy L. Dunn, FNAO
    Panel Photo "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

Greg dePrisco

"How We 'See' PSC: A Primer to Imaging Tests for PSC" [Copyright Gred dePrisco, all rights reserved, 33345 KB]
Greg dePrisco, MD, Diagnostic Radiologist

Tiffany Anthony

"Liver Transplant: A Surgeon's Perspective" [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 photo

"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
Amal Aqul"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

Jeffrey Weinstein

"Diagnosing and Managing Cancers of the Liver and Bile Ducts" [Copyright Jeffrey Weinstein, all rights reserved, 5075 KB]
Jeffrey Weinstein, MD, Medical Director of Liver Transplantion and Hepatobiliary Services, The Liver Institute, Methodist Dallas

David N. Assis

"PSC and the Drug Approval Process"
David N. Assis, MD, Assistant Professor of Medicine, Yale University School of Medicine, Section of Digestive Diseases

  Panel photo"PANEL: Caregivers: Helping Us Help Others" [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

Naim Maalouf

"Bone Health in Primary Sclerosing Cholangitis
Naim Maalouf
, MD, Associate Professor of Medicine, Center for Mineral Metabolism, University of Texas Southwestern Medical Center

Sumeet K. Asrani

"Interpreting Your Liver Test Results[Copyright Sumeet K. Asrani, all rights reserved, 1334 KB]
Sumeet K. Asrani
, MD, MSc, Baylor University Medical Center in Dallas

James Trotter

"Liver Transplant: Myth and Reality[Copyright James Trotter, all rights reserved, 5302 KB]
James Trotter, MD,  Director, General and Transplant Hepatology, Baylor Health Care System

Amal Aqul

"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
Jeanette Hasse"Nutrition & PSC: OK, Now What Do I Eat?[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

Bill Wise & Kerrie Goldsmith

"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
Caiitriona Ryan"Pruritus in PSC" [Copyright Caitriona Ryan, all rights reserved 3854 KB]
Caitriona Ryan, MD, Vice Chair - Department of Dermatology, Baylor University Medical Center, Dallas

Tiffany Rotondo

"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 & Joanne Hatchett"The Benefits of Advance Care Planning: Your Choice, Your Voice, Your Values
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

Ken Shepherd & Chris Browner

"Fundraising Basics" 
Ken ShepherdPSC Partners Seeking a Cure Board Chairman, Parent of Post-Transplant PSCer
Chris BrownerPSC Partners Seeking a Cure Board Member, Parent of PSCer

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

Saturday Dinner Photo   Saturday Dinner Photo   Saturday Dinner Photo   Saturday Dinner Photo

Saturday Dinner Photo   Saturday Dinner Photo   Saturday Dinner Photo   Saturday Dinner Photo   Saturday Dinner Photo

Saturday Karaoke   Saturday Karaoke   Saturday Karaoke   Saturday 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!

 

                       Hulk and Tira