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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

Silver level

Bronze level

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 Tennessee!

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

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

Breakout Sessions:

  • Session I: Question and Answer Panel on Pediatric PSC Panelist:
    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:
    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:
    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

  • 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

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

Attendees comments (click to view)

Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure.