Working together to provide research, education,

and support for people affected by Primary Sclerosing Cholangitis

 

CONFERENCE FOR PATIENTS AND CAREGIVERS

May 4 - 6, 2012

In conjunction with the Mayo Clinic at the Doubletree Hotel, Rochester, MN

Thank you to Drs. Keith D. Lindor, Konstantinos N. Lazaridis and Jayant A. Talwalkar for their professional guidance. Many thanks as well to all our wonderful speakers who have broadened our perspectives and understanding of PSC. We are also indebted to our conference sponsors:

 

Platinum level sponsors

Anonymous Donor

Illinois Tool Works

Gold level sponsors

Arne and Judy Myrabo
Anonymous Donor

Silver level sponsors
The Pearlman Family
Ken and Patty Shepherd
Jason and Jennifer Drasner
Steve and Joanne Grieme
Steve and Joanne Hatchett
Toyota Motor Sales USA
Sigma-Tau Pharmaceuticals
Bronze level sponsors

Aubrey Goldstein and Caroline Vanneste
Anonymous Donor
Genentech
Peter and Helena Holmgren

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 2012 patient education conference by viewing the PowerPoint presentations which are posted here. Summaries of the breakout 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) and Arne Myrabo.

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 video of conference photographs by K Pearlman Photography is available here.  See part 1, part 2 and part 3 for her "stills".

FRIDAY May 4, Pre-conference Event

10:30AM-12:30PM

Informal brunch at the Rochester Art Center:

Optional Afternoon Activities

Stress Management and Resiliency Training (SMART) - Program for PSCers and Caregivers

Amit Sood, MD, MSc, Associate Professor of Medicine, Director of Research and Practice, Integrative Medicine, Associate Director, General Internal Medicine Research Fellowship, Chair Mayo Mind Body Initiative

 

Registration:

Newcomer Orientation   Welcome Reception  
   

SATURDAY May 5, Day 1 (click to see presentation/enlarged photo)

Buffet Breakfast

SESSION I  Keith D. Lindor, MD  Moderator

Executive Vice Provost of Health Outcomes@ASU

Presentation 1: "Management of Symptoms Related to PSC"  [Copyright Jayant A. Talwalkar, all rights reserved, 2184 KB]. Jayant A. Talwalkar, MD, MPH Associate Professor of Medicine, Mayo Clinic Rochester

Presentation 2: "Coping with PSC: It’s Not 'All in Your Head'"

Philip Burke, PhD Clinical Psychologist, Assistant Professor of Clinical Psychology Southern Illinois University at Carbondale, PSC Patient

Presentation 3: "MELD System: Past and Present" [Copyright Patick S. Kamath, all rights reserved, 1448 KB]. Patrick S. Kamath, MD Professor of Medicine, Mayo Clinic College of Medicine

Questions and Answers Panel: Drs. Talwalkar, Burke and Kamath
   

SESSION II  Konstantinos N. Lazaridis, MD  Moderator
Associate Professor of Medicine, Associate Chair Research Division of Gastroenterology and Hepatology Associate Director – Rochester Center for Individualized Medicine Mayo Clinic College of Medicine

Presentation 4: "Ongoing and Future Medical Therapies for PSC" . [Copyright Keith D. Lindor all rights reserved, 564KB].  Keith D. Lindor, MD, Executive Vice Provost of Health Outcomes@ASU

Presentation 5: "PROGRESS: Beginning to Understand the Genetic Predisposition to PSC". [Copyright Konstantinos N. Lazaridis all rights reserved, 1434 KB]. Konstantinos N. Lazaridis, MD Moderator Associate Professor of Medicine, Associate Chair Research Division of Gastroenterology and Hepatology Associate Director – Rochester Center for Individualized Medicine Mayo Clinic College of Medicine

Presentation 6: "Sleep and Chronic Illness" [Copyright John G. Park all rights reserved, 1777 KB]. John G. Park, MD, FCCP, FAASM Assistant Professor of Medicine Division of Pulmonary Critical Care and Sleep Mayo Clinic College of Medicine

Questions and Answers Panel: Drs. Lindor, Lazaridis and Park

Lunch

Breakout Sessions:

Gregory J. Gores, M.D.

"Cancer Surveillance: Risks and Outcomes" [Copyright Gregory J. Gores all rights reserved, 556KB], Gregory J. Gores, MD Chair of Gastroenterology and Hepatology Mayo Clinic Rochester

Edward V. Loftus Jr., M.D.

"Inflammatory Bowel Disease and PSC" [Copyright  all rights reserved, 14KB] Edward V. Loftus, Professor of Medicine Mayo Clinic Rochester

Jayant A. Talwalkar, M.D.

"Role of MRI and Advanced Endoscopic Techniques in PSC " [Copyright Jayant A. Talwalkar, all rights reserved, 3340KB] Jayant A. Talwalkar, MD, MPH Associate Professor of Medicine Mayo Clinic Rochester

Julie K. Heimbach, M.D.

"Living Donor Liver Transplantation: A Guide" [Copyright Julie K. Heimbach all rights reserved, 4083KB] Julie K. Heimbach, MD Surgical Director, Liver Transplantation Mayo Clinic Rochester

"Proactive Planning for Transplant" [Copyright Lynn Pearson all rights reserved, 4083KB] Lynn Pearson, RN, CCTC Moderator Mayo Clinic Rochester
Jayne Kleist, LSW, Mayo Clinic Rochester
Marilyn Salley Patient Financial Services Representative Transplant Programs, Mayo Clinic Rochester

Jayant A. Talwalkar, M.D.

"Life After Liver Transplant" [Copyright Jayant A. Talwalkar all rights reserved, 1098KB] Jayant A. Talwalkar, MD, MPH Associate Professor of Medicine, Mayo Clinic Rochester

Photo of Andrea Gossard, nurse practitioner

"Interpreting Your Test Results"  [Copyright Andrea A. Gossard all rights reserved, 797KB] Andrea A. Gossard, RN, CNP Assistant Professor of Medicine Mayo Clinic Rochester

Joseph A. Murray, M.D.

"Celiac Disease"  [Copyright Joseph A. Murray all rights reserved, 7492KB] Joseph A. Murray, MD Professor of Medicine, Consultant, Division of Gastroenterology and Hepatology and Department of Immunology, Mayo Clinic Rochester

"Gluten Free Diet" [Copyright Jacalyn A. See all rights reserved, 3253KB] Jacalyn A. See, MS, RD Clinical Dietitian, Assistant Professor of Nutrition, Mayo Clinic Rochester

"Understanding PSC Medications"  [Copyright Christine M. Formea all rights reserved, 403KB] Christine M. Formea, Pharm D. Manager of Pharmacy Research Service, Mayo Clinic Rochester

Richa   Sood, M.D.

"Relationships, Sexuality and Family Planning"  [Copyright Richa Sood all rights reserved, 5555KB] Richa Sood, MD Assistant Professor of Medicine Mayo Clinic College of Medicine
Andrea A. Gossard, RN, CNP Assistant Professor of Medicine Mayo Clinic Rochester

"How Do I Deal with Life and PSC?" Philip Burke, PhD Clinical Psychologist, Assistant Professor of Clinical Psychology Southern Illinois University at Carbondale, PSC Patient
Wendi M. Hirsch, PhD Clinical Psychologist, Sister of PSC Patient

Breakout Sessions (no formal presentation)

"Pediatric Parents: Letting your Kid Be a Kid" Saul J. Karpen, MD, PhD Professor of Pediatrics, Division Chief, Pediatric Gastroenterology, Hepatology and Nutrition Emory University School of Medicine

Photo of Nataliya Razumilava ., M.D.Photo of Andrea Gossard, nurse practitioner

"Special Topics for 20s/30s Female PSCers"
Nataliya Razumilava, MD Fellow, Division of Gastroenterology and Hepatology Mayo Clinic Rochester
Andrea A. Gossard, RN, CNP Assistant Professor of Medicine Mayo Clinic Rochester

Photo of Craig Lammert S., M.D.

"Special Topics for 20s/30s Male PSCers" Craig S. Lammert, MD Research Fellow in Gastroenterology and Hepatology Mayo Clinic Rochester

"Caregivers: Helping Us Help Others" Mike Pearlman, JD, PSC Parent Moderator Panel of PSC Caregivers

"Teen Session: Letting Yourself be a Teenager" Saul J. Karpen, MD, PhD Professor of Pediatrics, Division Chief, Pediatric Gastroenterology, Hepatology and Nutrition Emory University School of Medicine

"The Future of PSC Research" Keith D. Lindor, MD Moderator Executive Vice Provost of Health Outcomes@ASU
Panelists: Konstantinos N. Lazaridis, MD Associate Professor of Medicine, Associate Chair Research Division of Gastroenterology and Hepatology Associate Director – Rochester Center for Individualized Medicine Mayo Clinic College of Medicine
Jayant A. Talwalkar, MD, MPH Associate Professor of Medicine Mayo Clinic Rochester
Saul J. Karpen, MD, PhD Professor of Pediatrics, Division Chief, Pediatric Gastroenterology, Hepatology and Nutrition Emory University School of Medicine

"Be Informed: Disability Benefits and Employment Law Issues"  Rebecca Long, JD, PSC Partners Board Member, Legal Advisor
Jeremy Burke, ALHC, Learning Consultant Aetna Disability Benefits Management Services
Tiffany Rotondo, PHR, Corporate Human Resources Generalist The Jel Sert Company

"Special Topics for Post-Transplant PSCers"  Aubrey Goldstein, MD Vice-President, Medical Staff, Bruyere Continuing Care, Member of PSC Partners Scientific/Medical Advisory Committee PSC Post Transplant Patient

"Make a Difference : Effective Person-to-Person Fundraising Made Easy"

Ken Shepherd, Managing Partner, Miller Toyota & Warrenton Toyota PSC Parent
Sandi Pearlman, 2012 Conference Co-Chair Community Relations Chair, PSC Partners Seeking a Cure PSC Patient

Meegan Carey, Director of Development PSC Partners Seeking a Cure

Wrap-up, Don and Ricky Safer

Banquet Dinner

SUNDAY MAY 6, Day 2

 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