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Working together to provide research, education, and support for people affected by Primary Sclerosing Cholangitis

CONFERENCE FOR PATIENTS AND CAREGIVERS

In conjunction with the Mayo Clinic at the Doubletree Hotel, Rochester, MN

Thank you to Drs. Keith D. Lindor, Konstantinos N. Lazaridis and Jayant A. Talwalkar for their professional guidance. 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:

Platinum level sponsors

  • Anonymous Donor
    Illinois Tool Works

Gold level sponsors

  • Arne and Judy Myrabo
    Anonymous Donor

Silver level sponsors

  • The Pearlman Family
    Ken and Patty Shepherd
    Jason and Jennifer Drasner
    Steve and Joanne Grieme
    Steve and Joanne Hatchett
    Toyota Motor Sales USA
    Sigma-Tau Pharmaceuticals

Bronze level sponsors

  • Aubrey Goldstein and Caroline Vanneste
    Anonymous Donor
    Genentech
    Peter and Helena Holmgren

We also thank all the members of our community 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. Please see the details of our 2012 patient education conference by viewing the PowerPoint presentations which are posted here. Summaries of the breakout sessions are  available in our post-conference newsletter edition. For more information about PSC Partners Seeking a Cure, go to www.pscpartners.org and click on “Join our Mailing List” button to receive news and information.

Photograph acknowledgements to Karen Pearlman, (K Pearlman Photography) and Arne Myrabo.

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 video of conference photographs by K Pearlman Photography is available here.  See part 1, part 2 and part 3 for her "stills".

FRIDAY May 4, Pre-conference Event

10:30AM-12:30PM

Informal brunch at the Rochester Art Center:

Optional Afternoon Activities

  • Stress Management and Resiliency Training (SMART) - Program for PSCers and Caregivers

    Amit Sood, MD, MSc, Associate Professor of Medicine, Director of Research and Practice, Integrative Medicine, Associate Director, General Internal Medicine Research Fellowship, Chair Mayo Mind Body Initiative

Registration:

Newcomer Orientation

Welcome Reception

SATURDAY May 5, Day 1 (click to see presentation/enlarged photo)

Buffet Breakfast

Lunch

Breakout Sessions:

Breakout Sessions (no formal presentation)

  • "Pediatric Parents: Letting your Kid Be a Kid"

    Saul J. Karpen, MD, PhD Professor of Pediatrics, Division Chief, Pediatric Gastroenterology, Hepatology and Nutrition Emory University School of Medicine

  • "Special Topics for 20s/30s Female PSCers"

    Nataliya Razumilava, MD Fellow, Division of Gastroenterology and Hepatology Mayo Clinic Rochester
    Andrea A. Gossard, RN, CNP Assistant Professor of Medicine Mayo Clinic Rochester

  • "Special Topics for 20s/30s Male PSCers"

    Craig S. Lammert, MD Research Fellow in Gastroenterology and Hepatology Mayo Clinic Rochester

  • "Caregivers: Helping Us Help Others"
    "Caregivers: Helping Us Help Others"

    Mike Pearlman, JD, PSC Parent Moderator Panel of PSC Caregivers

  • "Teen Session: Letting Yourself be a Teenager"

    Saul J. Karpen, MD, PhD Professor of Pediatrics, Division Chief, Pediatric Gastroenterology, Hepatology and Nutrition Emory University School of Medicine

  • "The Future of PSC Research"
    "The Future of PSC Research"

    Keith D. Lindor, MD Moderator Executive Vice Provost of Health Outcomes@ASU
    Panelists: Konstantinos N. Lazaridis, MD Associate Professor of Medicine, Associate Chair Research Division of Gastroenterology and Hepatology Associate Director – Rochester Center for Individualized Medicine Mayo Clinic College of Medicine
    Jayant A. Talwalkar, MD, MPH Associate Professor of Medicine Mayo Clinic Rochester
    Saul J. Karpen, MD, PhD Professor of Pediatrics, Division Chief, Pediatric Gastroenterology, Hepatology and Nutrition Emory University School of Medicine

  • "Be Informed: Disability Benefits and Employment Law Issues"
    "Be Informed: Disability Benefits and Employment Law Issues"

    Rebecca Long, JD, PSC Partners Board Member, Legal Advisor
    Jeremy Burke, ALHC, Learning Consultant Aetna Disability Benefits Management Services
    Tiffany Rotondo, PHR, Corporate Human Resources Generalist The Jel Sert Company

  • "Special Topics for Post-Transplant PSCers"
    "Special Topics for Post-Transplant PSCers"

    Aubrey Goldstein, MD Vice-President, Medical Staff, Bruyere Continuing Care, Member of PSC Partners Scientific/Medical Advisory Committee PSC Post Transplant Patient

  • "Make a Difference : Effective Person-to-Person Fundraising Made Easy"
    "Make a Difference : Effective Person-to-Person Fundraising Made Easy"

    Ken Shepherd, Managing Partner, Miller Toyota & Warrenton Toyota PSC Parent
    Sandi Pearlman, 2012 Conference Co-Chair Community Relations Chair, PSC Partners Seeking a Cure PSC Patient
    Meegan Carey, Director of Development PSC Partners Seeking a Cure

Wrap-up, Don and Ricky Safer

Banquet Dinner

SUNDAY MAY 6, Day 2

Continental Breakfast 

  • General Session
    • PSC Partners Foundation Report
    • Announcements
    • Foundation Updates
  • Breakout sessions:
    • Teen PSCers Female PSCers in their 20s/30s
    • Male PSCers in their 20s/30s
    • Female PSCers Male PSCers
    • Post-Transplant PSCers
    • Parents of Pediatric PSCers
    • Parents of Adult PSCers
    • Spouses/Caregivers of PSCers
    • Siblings & Other Caregivers of PSCers  

Break/snacks

Closing Remarks - 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.