About the Platelet Disorder Support Association

The Platelet Disorder Support Association is a non-profit corporation founded in August, 1998, to provide information, offer support, and encourage research about ITP and other platelet disorders. It all began as a simple idea in the spring of 1997: construct a Web site that provided a place to share our ITP stories. Since its inception, pdsa.org has grown to 200+ pages of FREE information and support and has become the premier source for medical professionals and patients with ITP and other platelet disorders.

PDSA Programs Patient Education - We provide online and printed information that enhances the knowledge of the

disease, treatments, and wellness practices. We investigate and report the most recent research findings and treatment recommendations.

Support Services - Our services promote patient-to-patient, patient-to-physician, and patient-to-medical provider communication. We encourage patient involvement in treatment and lifestyle decisions.

Public Education - Through contacts with the media and the publication of educational materials, we strive to increase the amount of information presented and available about ITP and other platelet disorders.

Platelet Disorder Research and Advocacy - We assist and encourage research for the treatment of ITP and other platelet disorders through surveys and collaboration with the National Institutes of Health, physicians, and researchers.

Board of Directors:

Peter Pruitt, Chair Karen Avrick

Brian Bamesberger

Jay Charness, Vice Chair

Beth Siegelbaum, Secretary Linda McGuirl Jamie Harwell

Kim Everett, Treasurer

Dale Paynter Diane Joseph

Medical Advisors:

Donald Arnold, MDCM, MSc James Bussel, MD

Douglas Cines, MD Amy Geddis, MD, PhD Terry Gernsheimer, MD

Andra H. James, MD, MPH Craig Kessler, MD

David Kuter, MD, DPhil Robert McMillan, MD, Emeritus

Diane Nugent, MD

Michele Lambert, MD, MTR Howard A. Liebman, MD

Drew Provan, MD John Semple, PhD

Michael Tarantino, MD

Officers and Staff:

Caroline Kruse, Executive Director Jeff Cooper, Web site & Social Media Manager

Brenda Foster, Administrative Manager Teri Howe, Grant Writer

Carol Hoxie, Communication Specialist Emily Innes, Intern

Alexandra Kruse, Research Coordinator Nancy Potthast, Director of Marketing Jody Shy, Programs & Events Manager Susan Zemon, Chief Financial Officer Joan Young, Founder

Contact Information:

PDSA 8751 Brecksville Road, Suite 150

Cleveland, OH 44141

Phone: 1-87-PLATELET (877) 528-3538 (440) 746-9003 Fax : (844) 270-1277

E-mail: pdsa@pdsa.org Web: www.pdsa.org

PDSA is a 501(c)(3) corporation. All contributions are tax deductible.

AGENDA FRIDAY, JULY 8 7:00 — 8:00 AM PDSA “Pump it up for Platelets” Fun Run………………...Pavilion 3:30 — 6:00 PM Registration/Exhibits Open ………………………...….Center Foyer 4:00 — 6:00 PM Canadian Patient Advocacy Meeting …………….…………Jackson Donald M. Arnold, MDCM, MSc, FRCP(C) and John W. Semple, PhD 5:00 — 6:00 PM Patient Centered Outcomes Research (PCOR): What is it and Why

is it Important to Patients with a Rare Disease ……………………………………………….... Floridian Ballroom ABC

Danielle Whicher, PhD, MHS (Patient Centered Outcome Research Institute)

6:00 — 7:00 PM Patient Mixer…………………...………………………………Pavilion 7:00 — 8:30 PM Concurrent Presentations

The ABCs of ITP: How Much Do You Really Know about This Autoimmune Bleeding Disorder? (Take the ITP Jeopardy Challenge) ………………………………...…….... Floridian Ballroom ABC

David Kuter, MD, DPhil Recent Insights on ITP Pathogenesis

………………………………...…….... Floridian Ballroom ABC John Semple, PhD Children with ITP: Treatments, School & Sports…..Jackson James Bussel, MD For Teens Only*……………..………...……………..Manatee Michele P. Lambert, MD, MTR and Michael Tarantino, MD 8:30 — 9:30 PM Ice Cream Social…….……………………....Floridian Ballroom ABC SATURDAY, JULY 9 8:00 — 9:00 AM Registration/Exhibits …………………………….………Center Foyer Continental Breakfast .......................................................Center Foyer 9:00 — 10:00 AM Concurrent Presentations

Treating ITP: Balancing Risks vs. Benefits ……………………………………………….... Floridian Ballroom ABC

Donald M. Arnold, MDCM, MSc, FRCP(C); James Bussel, MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Michele P. Lambert, MD, MTR; Howard A. Liebman, MD; John W. Semple, PhD; and Michael Tarantino, MD

Feeling Invincible: Teens Living with Chronic Illness*.......Jackson Jane Pernotto Ehrman, MEd

10:00 — 10:15 AM Break 10:15 — 11:30 AM Concurrent Presentations

Top Concerns for ITP Patients: From Fatigue to Vaccines ………………………………………………….Floridian Ballroom ABC

Donald M. Arnold, MDCM, MSc, FRCP(C); James Bussel, MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Howard A. Liebman, MD; and John W. Semple, PhD

Teen/Young Adult* ……………………………………….….Manatee Michele P. Lambert, MD, MTR and Michael Tarantino, MD

11:30 — 11:45 AM Break 11:45 — 12:45 PM Concurrent Presentations

For Women and Girls Only: Bleeding Disorders and Reproductive Issues…………………………………………...Jackson

Terry Gernsheimer, MD and Craig Kessler, MD Care for the Caregiver…………………..….Floridian Ballroom ABC Jane Pernotto Ehrman, MEd 12:45 — 1:45 PM Lunch Break with PDSA Medical Advisors ………………Pavilion 1:45 — 2:45 PM Communicating With Your Doctor: What Every ITP Patient

Wants Their Doctor to Know…..…….……Floridian Ballroom ABC Donald M. Arnold, MDCM, MSc, FRCP(C); James Bussel, MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Howard A. Liebman, MD; and John W. Semple, PhD

2:45 — 3:00 PM Break 3:00 — 4:00 PM Concurrent Presentations ITP in Adults: Q&A ………………………Floridian Ballroom ABC

Donald M. Arnold, MDCM, MSc, FRCP(C); James Bussel, MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Howard A. Liebman, MD; and John W. Semple, PhD

ITP in Children: Q&A …………………………….…………..Jackson Michele P. Lambert, MD, MTR and Michael Tarantino, MD

4:00 — 4:15 PM Break 4:15 — 5:15 PM Can We Cure ITP? Research that Considers Patients’ Needs

……………………………………………...…..Floridian Ballroom ABC James Bussel, MD; Craig Kessler, MD; and David J. Kuter, MD, DPhil

5:15 — 5:30 PM Announcements 5:30 — 7:00 PM Pre-dinner Break 7:00 — 8:00 PM Educational Dinner Program ………….. Floridian Ballroom ABC Complimentary Dinner Program from Amgen 8:00 — 10:00 PM Saturday Evening Family Fun Event …..………………….. Pavilion

SUNDAY, JULY 10 8:00 — 9:30 AM Support Group Facilitators’ Workshop (pre-registration requested)

………………………………………………………………….. Escambia 8:30 — 9:30 AM Continental Breakfast ……………………….………...Center Foyer 9:30 -- 10:30 AM Bringing Your Best to Life and Health Challenges …………………………………………….….Floridian Ballroom ABC Jane Pernotto Ehrman, MEd 10:30 — 10:45 AM Break 10:45 — 11:45 AM Living with ITP……………………………... Floridian Ballroom ABC Patients share their stories 11:45 — 12:00 PM Closing Remarks

*A separate track for teens and young adults will run Friday from 7-8:30pm, Saturday from 9am-11:30am, and free time after lunch as a group at the hotel pool and game room.

**Agenda and Speakers subject to change

THE PLATELET STORE

Friday 3:30 pm – 7:00 pm

Saturday 8:00 am – 5:30 pm

Sunday 8:00 am – 12:30 pm

AWARENESS ITEMS FOR SALE

Awareness Bands Ball Caps and Visors

Medical Alert Jewelry

Tumblers Awareness T-shirts and

Golf Shirts Awareness Key Rings

Designer Jewelry Headbands

Books and DVDs

ITP KIDS CAMP -- Dade

Friday 5:00 pm – 6:00 pm 7:00 pm – 8:30 pm

Saturday 9:00 am – 5:30 pm

Sunday 9:30 am – 12:00 pm

SPEAKERS

Donald M. Arnold, MDCM, MSc, FRCP(C) Dr. Arnold is an Assistant Professor in the Department of Medicine at McMaster University in Hamilton, Canada and Program Director for the McMaster Transfusion Medicine Residency Program. Dr. Arnold obtained his MD from McGill University and completed training in Internal Medicine at the Jewish General Hospital in Montreal. He then completed Hematology training at McMaster in 2003 and a Fellowship in Transfusion Medicine supported by the Canadian Blood Services and the Canadian Institutes for Health

Research (CIHR). He holds a Master's degree in Health Research Methodology from McMaster and is the recipient of a CIHR New Investigator Award. Dr. Arnold is a translational researcher with a focus on immune thrombocytopenia (ITP). He is the lead investigator on several clinical trials in ITP and has developed a program of research that spans clinical studies designed to better understand patient preferences with respect to ITP treatments to basic research on the mechanisms of ITP.

James Bussel, MD Dr. James Bussel is Professor of Pediatrics, Medicine, and Obstetrics at the Weill Medical College of Cornell University in New York City. His training was initiated at Yale, continued at Columbia College of Physicians and Surgeons, then he completed a Pediatric Residency at Cincinnati Children's Hospital, and a Fellowship in Pediatric Hematology/Oncology at the combined Cornell/Memorial Sloan Kettering program. The great majority of Dr. Bussel's publications are centered around diagnosis and especially management of patients with

ITP, including children with ITP, adults with ITP, pregnant women with ITP, HIV infected patients with thrombocytopenia, and fetuses affected by autoimmune and alloimmune thrombocytopenia. He has worked with IVIg, IV anti-D, rituximab, and most recently the thrombopoietic agents.

Jane Pernotto Ehrman, MEd Jane Ehrman, owner of Images of Wellness, LLC, is a Mind/Body Medicine Specialist in Cleveland, Ohio, where she maintains a private practice. Her focus is to help clients transform their health and life challenges into opportunities for healing and personal growth. She works with adults and children on a variety of issues, including: High-risk pregnancy, chronic disease treatment and recovery issues, lifestyle behavior change, pain management, performance anxiety for students, musicians and athletes, stress-related illness and conditions (headaches, irritable bowel, insomnia), and preparation for

surgery. Besides her private work, Jane is the Lead Behavioral Health Specialist at the Cleveland Clinic’s Center for Lifestyle Medicine, in the Wellness Institute. There, she develops and implements the behavioral and stress management sections of lifestyle wellness programs for people with chronic disease related to lifestyle. Jane has a Master’s of Education from Pennsylvania State University, with an emphasis on Mind/Body Medicine and an undergraduate degree in Health Education from Youngstown State University. She completed post-graduate course work at Case Western Reserve University and Rainbow Babies and Children’s Hospital, Department of Child and Adolescent Behavioral Medicine, Cleveland, OH. Jane trained at The Harvard Mind/Body Medical Institute in Boston, MA, and the Academy for Guided Imagery in Malibu, CA. She is a Certified Health Education Specialist, a National Board Certified Diplomat in Clinical Hypnotherapy, and certified in Interactive Guided Imagery™ from the Academy for Guided Imagery.

Terry Gernsheimer, MD Dr. Terry Gernsheimer is Professor of Medicine at the University of Washington School of Medicine, Medical Director of the Platelet Antibody Laboratory at the Puget Sound Blood Center, and Director of Transfusion Services for the University of Washington Medical Center and the Seattle Cancer Care Alliance. Dr. Gernsheimer's research focuses on the pathophysiology and treatment of immune platelet disorders and pathologic immune responses associated with transfusion. She has clinical research interest in transfusion management of the hematopoietic stem cell transplant patient

and surgical bleeding in patients undergoing solid organ transplant and cardiovascular procedures. She has made significant contributions toward understanding the pathophysiology and management of autoimmune thrombocytopenic purpura (ITP).

Craig Kessler, MD Dr. Craig Kessler is professor of Medicine and Pathology and Section Chief of Hematology. He is also Director of the Coagulation Laboratory at Georgetown. A graduate of Tulane School of Medicine, Dr. Kessler received his specialty training in hematology and oncology at The Johns Hopkins Hospital. An international expert in the area of disorders of coagulation, Dr. Kessler has a particular interest in hemophilia. He also has expertise in

the treatment of hematologic malignancies.

David J. Kuter, MD, DPhil Dr. David Kuter is Chief of Hematology, Massachusetts General Hospital, Boston, Massachusetts. He earned a research doctorate (DPhil) at Magdalen College of Oxford University and a medical degree at Harvard Medical School. Dr. Kuter is Professor of Medicine at Harvard Medical School. In addition, Dr. Kuter sits on numerous national and international ITP committees and is board certified in Internal Medicine, Hematology, and Medical Oncology. He has dedicated years of effort to researching coagulopathies,

anticoagulation, and platelet disorders. In recent years, Dr. Kuter has conducted ground-breaking research into the development of effective thrombopoietic agents.

Michele P. Lambert, MD, MTR Dr. Lambert is an Assistant Professor of Clinical Pediatrics at the Children’s Hospital of Philadelphia and Medical Director of the Special Coagulation Laboratory at CHOP. She graduated from UMDNJ-New Jersey Medical School (now Rutgers) and completed her pediatric residency at St. Christopher’s Hospital for Children followed by a year as Chief Resident. She then moved to the Children’s Hospital of Philadelphia were she completed her fellowship in pediatric hematology/ oncology. She received her Masters in Translational Medicine in 2001. Her research efforts have focused on understanding the

control of platelet production by megakaryocytes (the cells that make platelets) and the ways in which genetics influence platelet function and number in various clinical scenarios including ITP and inherited platelet disorders.

Howard A. Liebman, MD Dr. Howard Liebman is Professor of Medicine and Pathology at the University of Southern California (USC) Keck School of Medicine, Los Angeles, CA. He serves as Medical Director of the Special Hemostasis Laboratory at the USC Norris Comprehensive Cancer Center and is Director of the fellowship program in hematology. Dr. Liebman received his medical degree from USC and completed his postgraduate training including a residency in internal medicine and fellowships in medical oncology and hematology at Los Angeles County - University of Southern California Medical Center. Dr. Liebman

completed a research fellowship at Tufts University - New England Medical Center, Boston, MA, and held faculty positions at Tufts University and Boston University, before returning to USC. Dr. Liebman's research interests include clinical management and characterization of haemostatic and thrombotic disorders, management of autoimmune blood disorders, and clinical therapy of HIV and AIDS. He has authored or co-authored 85 peer-reviewed publications and 26 reviews and chapters.

John W. Semple, PhD Dr. John Semple received his PhD in Immunology from Queen's University in 1986 and trained as a Post-Doctoral Fellow in the Banting and Best Department of Medical Research of the C.H. Best Institute, University of Toronto from 1986-1990. He joined St. Michael's Hospital in 1990 and is currently the Director of Transfusion Medicine Research of the Toronto Platelet

Immunobiology Group and a Professor of Pharmacology at the University of Toronto. Dr. Semple has published more than 120 papers on platelet immunology. His research activities include several areas including anti-platelet T cell responses in patients with acute and chronic ITP, the analysis of how platelet antigens are recognized by the immune system, and how platelets may act as immune-like cells that are responsible for initiating and perpetuating their own autoimmune demise.

Michael Tarantino, MD Dr. Michael Tarantino is a Professor of Pediatrics and Medicine at the University of Illinois College of Medicine-Peoria and Medical Director of the Bleeding & Clotting Disorders Institute. He received a doctoral degree in medicine from the University of Wisconsin School of Medicine in 1987. He completed an internship and residency at the University of Arizona Health Sciences Center and a Fellowship in Pediatric Hematology/Oncology at the University of Wisconsin School of Medicine. Dr. Tarantino first became interested in ITP during

his residency in 1988. Since that time he has designed and/or participated in numerous clinical investigations related to ITP and other platelet disorders. He has authored numerous publications relevant to the diagnosis and management of ITP, especially as it occurs in children. He is also active in hemophilia and other bleeding disorders research, and founded The Bleeding and Clotting Disorders Institute in 2010.

Danielle M. Whicher, PhD, MHS Danielle Whicher, PhD, MHS, is a Program Officer for the Clinical Effectiveness Research (CER) team at the Patient Centered Outcomes Research Institute (PCORI). She is responsible for developing funding announcements and managing PCORI funded research contracts. Whicher is also a staff liaison to the PCORI Advisory Panel on Rare Disease. Before joining PCORI, Whicher was a project coordinator at the Johns Hopkins Berman Institute for Bioethics. In this role, she worked on research designed to engage patients and

other stakeholders in conversations about appropriate approaches to disclosure and authorization for enrolling patients in CER studies. Whicher previously was a project manager at the Center for Medical Technology Policy. At CMTP, she managed a number projects designed to engage stakeholders in discussions about the design of CER studies, as well as in activities that aimed to develop prioritized research agendas for different high-priority research topics. She has authored a number of manuscripts on policy, methods, and CER-related ethics issues, and was a guest lecturer for the Introduction to Comparative Effectiveness and Outcomes Research course at the Johns Hopkins Bloomberg School of Public Health. Whicher received a BA in molecular biology from Colgate University. She also received an MHS in health policy and management and a PhD in health policy and management and bioethics, both from the Johns Hopkins Bloomberg School of Public Health.

Patient Centered Outcomes Research (PCOR): What is it and Why is it Important to Patients with a Rare Disease? - Danielle Whicher, PhD, MHS (Patient Centered Outcome Research Institute)

________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Concurrent Presentations • The ABCs of ITP: How Much Do You Really Know about This Autoimmune

Bleeding Disorder? (Take the ITP Jeopardy Challenge) - David Kuter, MD, DPhil

• Recent Insights on ITP Pathogenesis - John Semple, PhD • Children with ITP: Treatments, School & Sports - James Bussel, MD • For Teens Only - Michele P. Lambert, MD, MTR and Michael Tarantino, MD

____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Concurrent Presentations • Treating ITP: Balancing Risks vs. Benefits - Donald M. Arnold, MDCM, MSc,

FRCP(C); James Bussel, MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Michele P. Lambert, MD, MTR; Howard A. Liebman, MD; John W. Semple, PhD; and Michael Tarantino, MD

• Feeling Invincible: Teens Living with Chronic Illness - Jane Pernotto Ehrman, MEd

____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Top Concerns for ITP Patients: From Fatigue to Vaccines - Donald M. Arnold, MDCM, MSc, FRCP(C); James Bussel, MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Howard A. Liebman, MD; and John W. Semple, PhD

__________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ _____________________________________________________________________________

Concurrent Presentations • For Women and Girls Only: Bleeding Disorders and Reproductive Issues -

Terry Gernsheimer, MD and Craig Kessler, MD • Care for the Caregiver - Jane Pernotto Ehrman, MEd

________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Communicating With Your Doctor: What Every ITP Patient Wants Their Doctor to Know - Donald M. Arnold, MDCM, MSc, FRCP(C); James Bussel, MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Howard A. Liebman, MD; and John W. Semple, PhD

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Concurrent Presentations • ITP in Adults: Q&A - Donald M. Arnold, MDCM, MSc, FRCP(C); James Bussel,

MD; Terry Gernsheimer, MD; Craig Kessler, MD; David J. Kuter, MD, DPhil; Howard A. Liebman, MD; and John W. Semple, PhD

• ITP in Children: Q&A - Michele P. Lambert, MD, MTR and Michael Tarantino, MD

___________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Can We Cure ITP? Research that Considers Patients’ Needs - James Bussel, MD; Craig Kessler, MD; and David J. Kuter, MD, DPhil

______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ __________________________________________________________________________________________ _____________________________________________

Bringing Your Best to Life and Health Challenges - Jane Pernotto Ehrman, MEd

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SPECIAL THANKS

We are thankful to the many people and corporations who help make this conference a success

Volunteers:

Andrew Avrick Karen Avrick Charity Backs Jay Charness Jim Everett Kim Everett

Erin Foster Jamie Harwell Melissa Hilsabeck Chris Hoxie Kristin Hunt Diane Joseph

Dale Paynter Peter Pruitt Sharon Putnam Allison Shy Brendan Shy Jon Shy Nicholas Undicelli

Speakers: Donald Arnold, MDCM,

MSc, FRCP(C) James Bussel, MD Jane Pernotto Ehrman, MEd

Terry Gernsheimer, MD Michele Lambert, MD Craig Kessler, MD David Kuter, MD, DPhil Howard A. Liebman, MD

John W. Semple, PhD Michael Tarantino, MD Danielle M. Whicher, PhD, MHS

Patient Panel: Katie Meloy Yvonne Molino Keith Ori Dale Paynter

Platinum Sponsor: Amgen Tote Bag Sponsor: Rigel Gold Sponsors: Novartis, Rigel USB Sponsor: Bristol-Myers Squibb Silver Sponsor: Octapharma Scholarship Sponsors: Emergent BioSolutions, Amgen Exhibitors: Amgen

Emergent BioSolutions Diplomat Clinical Specialty Infusions

Octapharma Protalex Rigel

Posters: Seven Corners Print & Promo/ Dan Winter Raffle Donors:

Sara Armstrong Lily Henson/ Henson Designs Howard Liebman, MD

PDSA Board Members PDSA Staff