Working together to provide research, education, and support for people affected by Primary Sclerosing Cholangitis
CONFERENCE FOR PATIENTS AND CAREGIVERS
May 2-4, 2008
Mayo Clinic, Jacksonville, FL
We would like to thank our sponsors for making this weekend possible:
We are indebted to all the speakers who have agreed to contribute to this conference, especially Dr. Denise Harnois and her colleagues from the Mayo Clinic.
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 acknowledgement (and thanks!) to:
Pat Bandy
Cindy Rodgers
Nicklas Holmgren
Melanie Scherder
Arne Myrabo
Caroline Vanneste
Marie Nilsson
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.
FRIDAY MAY 2, Pre-conference activities (click to see photos)
Morning to early afternoon
6:00 pm to 9:00 pm
SATURDAY MAY 3, Day 1 (click to see presentation/enlarged photo)
Continental Breakfast
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Opening Remarks (8:00-8:10) Don and Ricky Safer, PSC Partners Seeking a Cure Foundation
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(874 KB) [Copyright Denise Harnois, all rights reserved]
Dr. Denise M. Harnois, Mayo Clinic
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(2349 KB) [Copyright Gregory Gores, all rights reserved]
Keynote Speaker- Dr. Greg Gores, Mayo Clinic, Rochester MN
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(1776 KB) [Copyright Winston Hewitt, all rights reserved]
Dr. Winston Hewitt, Mayo Clinic
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Question and Answer Panel - Moderator: Dr. Denise M. Harnois
Break/Snacks
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(2294 KB) [Copyright Jaime Aranda-Michel, all rights reserved]
Dr. Jaime Aranda-Michel, Mayo Clinic
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(1168 KB) [Copyright Michael Picco, all rights reserved]
Dr. Michael Picco, Mayo Clinic
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(6517 KB) [Copyright Stephen Lange, all rights reserved]
Dr. Stephen Lange, Mayo Clinic
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(371 KB) [Copyright Adriana Vasquez, all rights reserved]
Dr. Adriana Vasquez, Mayo Clinic
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Question and Answer Panel - Moderator: Dr. Denise M. Harnois
Lunch with a Physician
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Presentation 8 - The Transplant Experience Question and Answer Panel Patients/caregivers
Panelists:
Dr. Aubrey Goldstein
Pat Bandy
Joanne GriemeModerator:
Dr. Andrew Keaveny
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Presentation 9 - Financial Issues (Health Insurance /Medicare/ Disability/ Pharmacy options) Question and Answer Panel
Panelists:
Christopher M. Toby-Transplant Financial Co-ordinator
Ann T. Few- Transplant Financial Co-ordinator
Jason DuBois-Pharmacist/Solid Organ Transplant Clinical Specialist
Elaine Gustetic-Case Manager/Social Worker
Tiffany A. Norman-Pre-transplant nurse
Kelly A. Norman-Post-transplant nurseModerator:
Dr. Andrew Keaveny
Break/snacks
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(3650 KB) [Copyright Tom Karlsen, all rights reserved]
Dr. Tom Karlsen, AASLD prize winner, Norwegian PSC Center, Medical Department, Rikshospitalet, Oslo, Norway
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(656 KB) [Copyright David Rhodes, all rights reserved]
David Rhodes, PhD. Purdue University, PSC Partners Seeking a Cure Board Member
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(309 KB) [Copyright Dennis Black, all rights reserved]
Dr. Dennis Black, University of Tennessee, Memphis
The Power of Humor - Shelley Hussey, PSC Caregiver/Author
SUNDAY MAY 4, Day 2 (click to see photos)
Continental Breakfast
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Presentation: Update on Dr. Chapman’s Research-Ivor Sweigler, PhD., PSC UK Support Group
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PSC Partners Seeking a Cure Progress Report (David Rhodes-Update on PSC Partners’ supported research and foundation financial report)
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Male PSCers/ Female PSCers/Spouses of PSCers/ Parents of PSCers/ PSCers on transplant list/Post-transplant PSCers/PSCers in their 20s and 30s
Break/snacks
Closing Remarks-Don and Ricky Safer, PSC Partners Seeking a Cure
Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure. Find information about clinical trials.