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:
Joanne and Steve Grieme
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
The Parry Family
Sigma Tau Pharmaceuticals-VSL#3
K Pearlman Photography
Don and Ricky Safer
The Wente Family
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.
Pre-pre-conference event - Wim arrives after his 512 mile bike ride from Tennessee!
Kankakee Daily Journal coverage - (click to view)
Photos courtesy of Lee Bria
FRIDAY MAY 1, Pre-conference activities (click to see photos)
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
SATURDAY MAY 2, Day 1 (click to see presentation/enlarged photo)
Opening Remarks - Don and Ricky Safer, PSC Partners Seeking a Cure Foundation
(3200 KB) [Copyright Richard Green, all rights reserved]
Dr. Richard Green: Chief, Division of Hepatology, Northwestern Memorial Hospital
(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
(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
(7500 KB) [Copyright John Martin, all rights reserved]
Dr. John Martin: Endoscopy Lab Director, Northwestern Memorial Hospital
(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
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”
Dr. Konstantinos Lazaridis: Associate Professor of Medicine, Mayo Clinic College of Medicine, Department of Gastroenterology, Rochester, MN
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 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 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
Male PSCers/ Female PSCers/Spouses of PSCers/ Parents of PSCers/ PSCers on transplant list/Post-transplant PSCers/PSCers in their 20s and 30s
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.