Working together to provide research, education,

and support for people affected by Primary Sclerosing Cholangitis

 

CONFERENCE FOR PATIENTS AND CAREGIVERS

May 1-3, 2009

Wyndham Chicago, Chicago IL

We'd like to thank the physicians at the Northwestern University Feinberg School of Medicine, especially Dr. Rich Green and Dr. John Martin, who have worked closely with us in planning the conference.  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:

Gold level - Illinois Tool Works

Silver level - Roche Pharmaceuticals

Silver level - Axcan Pharma

Silver level - Ken and Patty Shepherd

 

Bronze level - First Church in Wenham MA

Bronze level - Theresa Shanks

Copper level - Joanne and Steve Grieme

 

Additional sponsors:

Marilyn Alioto

American Liver Foundation, Great Lakes Division

Jeff and Reggie Belmont

Chris Klug Foundation

Ruth and Doron Blatt

Chicago Caregiver Magazine

Bruce and Carol Grover

Kahler Hotel Group

The Long Family

Lululemon Athletica

The Parry Family

Sigma Tau Pharmaceuticals-VSL#3

K Pearlman Photography

Starbuck's Coffee

Don and Ricky Safer

Swirlz Cupcakes

The Wente Family

Trader Joe's  

Dominick's

Walgreen's Specialty Care Pharmacy

 

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 support group http://health.groups.yahoo.com/group/psc-support/ 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.

Photograph acknowledgements to Karen Pearlman, (K Pearlman Photography) and Lee Bria.  All videos courtesy of Dike Ajiri.

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 complete listing of the conference photographs by Karen Pearlman is available at kpearlmanphotography.com.  Dike's videos are available through Flip Private Video sharing.

Pre-pre-conference event - Wim arrives after his 512 mile bike ride from Tennesee!

Kankakee Daily Journal coverage  - (click to view)

                           Video part I    Video part II (click)

Photos courtesy of Lee Bria

FRIDAY MAY 1, Pre-conference activities  (click to see photos) -----------------

10:30AM-12:30PM

Pre-Conference Event: Complimentary Brunch (click for video) at Private Residence in Lake Point Tower 505 N. Lake Shore Drive

       

Photos courtesy of Lee Bria

Optional Afternoon Activities: Architectural boat tour from Navy Pier (click for larger view))

          

or Cubs game (click for video) at Wrigley Field

Registration: Registration part 1       Registration part 2

Welcome Reception: Reception part 1     Accolades     Reception part 2  (click for video)

SATURDAY MAY 2, Day 1 (click to see presentation/enlarged photo) ----------

Buffet Breakfast

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

 

 

Presentation 1 “The Bile Ducts and the Liver in Health and Disease” (3200 KB) [Copyright Richard Green, all rights reserved] - Dr. Richard Green: Chief, Division of Hepatology, Northwestern Memorial Hospital

 

Presentation 2 Keynote Address: “Looking Ten Years Ahead: Potential Therapies for PSC” (4000 KB) [Copyright Jennifer Heathcote, all rights reserved] - Dr. Jenny Heathcote: University of Toronto, Canada, Head of the Patient Based Clinical Research Division at Toronto Western Research Institute

 

Presentation 3 “Live Donor Transplantation for PSC” (750 KB) [Copyright Michael Abecassis, all rights reserved] - Dr. Michael Abecassis: Chief, Division of Organ Transplantation Surgery, Northwestern Memorial Hospital

 

Question & Answer Panel Panel: Drs. Green, Heathcote, Abecassis, Baker

 

 

Break/Snacks

Presentation 4: “New Frontiers in Imaging Techniques and Tissue Acquisition in PSC” (7500 KB) [Copyright John Martin, all rights reserved] - Dr. John Martin: Endoscopy Lab Director, Northwestern Memorial Hospital

 

Presentation 5: “IBD and PSC” (1000 KB) [Copyright Terrence Barrett, all rights reserved] - Dr. Terry Barrett: Chief, Division of Gastroenterology, Northwestern Memorial Hospital

 

 

Presentation 6: “Behavioral Strategies for Coping with PSC/IBD” (470 KB) [Copyright Laurie Keefer, all rights reserved]  - Dr. Laurie Keefer: Director of the Center for Psychosocial Research in Gastroenterology, Northwestern Memorial Hospital

 

 

Question and Answer Panel Panel: Drs. Martin, Barrett, Keefer

 

 

Lunch with a Physician

Break-out groups:

Male PSCers/Female PSCers/Spouses of PSCers/Parents of pediatric

PSCers/Parents of adult PSCers/Post-transplant PSCers/PSCers in their 20s & 30s

“Know Your Rights- An Overview of Health Insurance and Federal Disability Law” Jennifer Jaff, Esq. Advocacy for Patients with Chronic Illness, Inc. Farmington, CT (www.advocacyforpatients.org) and Crohn’s Patient

 

Update on “PROGRESS: PSC Resource of Genetic, Risk, Environment, and Synergy Studies” Dr. Konstantinos Lazaridis: Associate Professor of Medicine, Mayo Clinic College of Medicine, Department of Gastroenterology, Rochester, MN

 

Breakout Sessions:

Session I: Question and Answer Panel on Pediatric PSC Panelist: Dr. Jeff Brown: Children’s Memorial Hospital, Division of Gastroenterology, Hepatology, and Nutrition, Assistant Professor of Pediatrics, Northwestern Feinberg

Session II: Pre-Transplant: Planning and Preparation Panelists:

Dr. Alfred Baker: Professor Emeritus, Division of Hepatology, Northwestern Feinberg School of Medicine

Janet Aminoff, LCSW: Outpatient Transplant Social Worker, Northwestern Memorial Hospital

 

Session III: The Post-Transplant Experience Panelists:

Dr. Jennifer Trainor: Assistant Professor of Pediatrics at Northwestern and living donor recipient

Dr. Aubrey Goldstein: PSC Partners Member and transplant recipient, Ottawa, Canada

 

Session IV: Nutrition and Healthy Living for PSC Panelists:

Beth Doerfler, MS, RD: Northwestern Feinberg School of Medicine

Dr. Laurie Keefer: Director, Center for Psychosocial Research in Gastroenterology, Northwestern Memorial Hospital

 

 

Session VI: Learn About PROGRESS: How to Get Involved

Panelist: Dr. Konstantinos Lazaridis

Wrap-up, Don and Ricky Safer

Banquet Dinner featuring The Second City improv comedy performers Tim Baltz, Rebecca Hanson, Rachel Miller, and Tim Ryder

*dinner sponsored by Illinois Tool Works

  • Prototype PSC-partners website - try it! 

  • 2009 Awards!  Congratulations to Drs. Lazaridis, Invernizzi, and Ponsioen!

SUNDAY MAY 3, Day 2 -------------------------------------------------------------------------------------

 Continental Breakfast 

Male PSCers/ Female PSCers/Spouses of PSCers/ Parents of PSCers/ PSCers on transplant list/Post-transplant PSCers/PSCers in their 20s and 30s

New brochures available!  "The Rules" (for reporting on breakout sessions - click each for video)

 Break/snacks

 

Transplantee's presentation (Deb as presenter - click for video)

 

 

 

 

Closing Remarks (request for volunteers - click for video) - Ricky Safer, PSC Partners Seeking a Cure

 

Attendees comments (click to view)