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:

Cordis Corporation - Platinum level sponsor

Astellas Pharma - Silver level sponsor

Axcan Pharma - Bronze level sponsor

Roche Pharmaceuticals

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

Registration/Reception and Casual Dinner

SATURDAY MAY 3, Day 1 (click to see presentation/enlarged photo) ----------

 

Continental Breakfast

                       

                

       

       

       

Break/Snacks

       

       

       

       

       

Lunch with a Physician

 

Dr. Picco with

male PSCers

Dr. Keavney with

male PSCers

Dr. Vasquez with spouses

Dr. Harnois with

spouses

Spouses table

 

Dr. Gores with

20s/30s group

Panelists:    Dr. Aubrey Goldstein

                    Pat Bandy

                    Joanne Grieme

Moderator:  Dr. Andrew Keaveny

               

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

       

Evening Banquet Photos

 

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

                               

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

 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

 Break/snacks

 

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