2019 National GVHD Patient Summit Agenda

Choose from sixteen workshops at the National GVHD Patient Summit and learn how to take charge of your GVHD.

Saturday, October 12, 2019

8:00 am:  Registration Opens

9:00 am:  Welcoming Remarks/Keynote Address

How to Live Your Best Life with Graft-versus-Host Disease 
Presenter:  Mimi Mahon PhD, CRNP, FAAN, FPCN, Pain and Palliative Care Service, National Institutes of Health Clinical Center
Learn strategies for planning for and making the most out of life while living with a chronic disease.
 

9:45 am:  Round 1 Workshops (choose one)

Your Eyes and Chronic Graft-versus-Host Disease 
Presenter:  Sandeep Jain MD, Dry Eye and Ocular GVHD Clinic, University of Illinois
Panelist: Sunita Nathan MD, Rush University Medical Center
Learn the symptoms of chronic graft-versus-host disease in your eyes and therapies available to treat it.
 
Exercise to Improve Stamina, Strength and Flexibility (also at 1:30 pm)
Presenter: Scott Kramer PT, DPT, Board Certified Oncology Specialist, The University of Kansas Health System
Presenter:  Ryan Rushton PT, DPT, CLT, Huntsman Cancer Institute, University of Utah
Assisting Physical Therapist:  Amanda Lukens PT, DPT, Spectrum Health Cancer Rehbilitation Program
Assisting Physical Therapist:  Kara Kaluske PTA, Spectrum Health Cancer Rehabilitation Program
Try some simple exercises to improve stamina and strength, and help manage symptoms of graft-versus-host disease.
 
Riding the Emotional Roller Coaster of Graft-versus-Host Disease
Presenter:  Katie Schoeppner MSW, LICSW,  Be The Match
Panelist:  Huma Khan MSN, RN, Advocate Bone Marrow Transplant and Cellular Therapy Program
Learn strategies for managing the emotional challenge of living with GVHD,  the benefits of peer counseling and professional counseling, and how to seek help online and in your community. 
 
Your Mouth and Graft-versus-Host Disease
Presenter:  Jaqueline Mays DDS, MHSc, PhD, National Institute of Dental and Craniofacial Research
Panelist: Stephanie Tsai MD, Loyola University Medical Center
Learn the symptoms of graft-versus-host disease in the mouth and therapies available to treat it.
 

10:45 am:  Break

11:00 am:  Round 2 Workshops (choose one)

Your Skin and Graft-versus-Host Disease
Presenter:  Milan Anadkat MD, Division of Dermatology, Washington University School of Medicine in St. Louis
Panelist:  Najla El Jurdi MD, Stem Cell Transplant Survivorship Clinic, University of Minnesota
Learn how chronic graft-versus-host disease can affect the skin and connective tissues and therapies available to treat it.
 
Using Technology and Other Strategies to Make Living with GVHD More Manageable
Presenter:  Leora Comis MPA, OTR/L, BCPR, LCT, FAOTA, CLT-LANA, Occupational Therapy Section, National Institutes of Health Clinical Center
Panelist:  Mark Juckett MD, University of Wisconsin Hospitals and Clinics
If GVHD is interfering with daily activities, learn about devices and strategies that can help you navigate tasks at work and home and allow you to continue activities you enjoy
 
Managing Pain
Presenter:  Sean O'Mahony MB, BCh, BAO, Hospice and Palliative Medicine, Rush University Medical Center
Panelist:    Mimi Mahon PhD, CRNP, FAAN, FPCN, Pain and Palliative Care Service, National Institutes of Health Clinical Center
Learn about drugs and non-drug therapies that can help you manage pain associated with graft-versus-host disease
 
Improve Your Sleep!
Presenter:  Eric Zhou PhD, Division of Sleep Medicine, Harvard Medical School 
Learn how insufficient sleep affects your physical and psychological health, barriers to getting enough sleep, and techniques for falling and staying asleep that are supported by research evidence.
 

12:15 pm: Lunch

1:30 pm:  Round 3 Workshops (choose one)

Managing Fatigue
Presenter: Kenneth R. Miller MD, Division of Hematology/Oncology, Tufts Medical Center
Panelist:  Christina Ferraro MSN, CNP, BMTCN, Cleveland Clinic
Learn why fatigue is common among people who have GVHD and what you can do to improve it.
 
GVHD of the GI Tract and Liver
Presenter:  Daniel Couriel MD, University of Utah Huntsman Cancer Institute
Panelist:  Jonathan Moreira MD, Northwestern Medicine Hematopoietic Stem Cell Transplantation Program
Learn the symptoms of GVHD of the gut and liver, how to distinguish GVHD from other medical issues with similar symptoms, and effective strategies for managing the disease and treatment side effects.
 
Your Lungs and Graft-versus-Host Disease
Presenter:  Guang-Shing Cheng MD, Fred Hutchinson Cancer Research Center
Panelist:  Iskra Pusic MD, MSCI , Siteman Cancer Center, Washington University in St. Louis, Barnes-Jewish Hospital
Learn how GVHD can affect the lungs and therapies to address the problem.
 
Exercise to Improve Your Stamina, Strength and Flexibility (also at 9:45 am)
 

2:30 pm:  Break

2:45 pm:  Round 4 workshops (choose one)

Yoga and Meditation
Presenter:  Cecily Hunt RYT-500
Try some gentle yoga in a relaxed setting. Learn how yoga and meditation can help relieve stress and relax you.
 
Secure Your Oxygen Mask First: Caring for a Loved One with GVHD
Presenter:  Michelle Bishop, PhD
Panelist: Sung Won Choi MD, MS, University of Michigan Center for Integrative Research in Critical Care
Learn about challenges caregivers, the patient's co-survivor, often face after transplant and strategies to manage them.
 
Genital GVHD, Sex and Intimacy
Presenter:  Pamela Stratton MD, National Institutes of Health
Panelist:     Eric Zhou PhD, Harvard Medical School, Dana-Farber Cancer Institute
Learn how GVHD can affect the genitals, and treatment options that can help relieve pain and allow for comfortable sex and intimacy.
 
Lightning Round Ask the Experts 
Panelist:  Saurabh Chhabra MD, MS  Medical College of Wisconsin
Panelist:  Najla El Jurdi MD, Stem Cell Transplant Survivorship Clinic, University of Minnesota
Panelist:  Mark Juckett MD, University of Wisconsin
Panelist:  John Galvin MD, MPH, GVHD Clinic, University of Illinois
Panelist:  Jackie Foster MPH, RN, OCN, Jason Carter Clinical Trials Program, Be The Match
Learn about new therapies in the pipeline, how to find a GVHD clinical trial, evaluating which therapy is right for you and more. 
 

3:45 pm:  Break

4:15 pm:  Networking groups (small group discussions with other attendees)

5:30 pm:  Reception