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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 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

  • Opening Remarks (8:00-8:10) Don and Ricky Safer, PSC Partners Seeking a Cure Foundation
  • Question and Answer Panel - Moderator: Dr. Denise M. Harnois

Break/Snacks

  • Question and Answer Panel - Moderator: Dr. Denise M. Harnois

Lunch with a Physician

  • Presentation 8 - The Transplant Experience Question and Answer Panel Patients/caregivers

    Panelists:
    Dr. Aubrey Goldstein
    Pat Bandy
    Joanne Grieme

    Moderator:
    Dr. Andrew Keaveny

  • 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 nurse

    Moderator:
    Dr. Andrew Keaveny

Break/snacks

The Power of Humor - Shelley Hussey, PSC Caregiver/Author

SUNDAY MAY 4, Day 2 (click to see photos)

Continental Breakfast

  • Presentation: Update on Dr. Chapman’s Research-Ivor Sweigler, PhD., PSC UK Support Group
  • PSC Partners Seeking a Cure Progress Report (David Rhodes-Update on PSC Partners’ supported research and foundation financial report)
  • 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.