You may click on any of the thumbnail images below to view captions and see the photos in a larger size.
These photos from ITP Conference 2018 are displayed in random order. You may click on any of the thumbnail images below to view captions and see the photos in a larger size.
Introduced in 2017, this program welcomes first-time attendees to the premier patient event. ITP Conference Ambassadors guide new guests through a weekend filled with in-depth disease information, treatment options, the latest research reports, access to world renowned specialists, and life-altering resources. Together they forge meaningful connections that eliminate the mystery and empower patients and caregivers to take control of ITP.
Meet This Year’s Ambassadors!
Cathy (ITP Warrior) and Raul (ITP Spouse) AldamaHometown: Laguna Niguel, CA
ITP Warrior & ITP Spouse since: 2006
Daily Inspiration:
Cathy: My family; and new travel adventures.
Raul: Today will be a great day if I let it be.
ITP Survival Tip:
Cathy: Seek out as much information as you can so you can be your best advocate.
Raul: Understand that you can control ITP more than it can control you.
Favorite thing about ITP Conference:
Cathy: hard to pick just one...so, all the great people...seeing old friends, and making new ones!...and, of course, the wealth of information!
Raul: It’s very encouraging to hear how optimistic the panel of experts are. The information and education and hope they provide is very encouraging.
Kim EverettHometown: Manitowoc, Wisconsin
ITP Warrior since: 1983
Daily inspiration: Life is 10% what happens to us and 90% how we react to it. Once a year travel someplace you’ve never been before, or pretend and just plan a trip, even if you never go. You learn so much while you dream of distant lands and read about different places and people.
ITP Survival tip: Learn how to advocate for yourself. Be kind to yourself, if treatments fail. Try not to second guess a past treatment decision, accept a failure and move on. Keep hope alive! Rest, meditate and listen to your body. Be kind to yourself and others, give back.
Favorite thing about ITP Conference: What I like most about the conference is knowing we’re not alone and the opportunity to learn enough information about ITP, so that we can advocate for ourselves, without feeling like we’re stupid. Knowledge is power!
Cassidy GalloHometown: Buffalo, NY
ITP Warrior since: 2011
Daily Inspiration: My family
ITP Survival Tip: Never let ITP define who you are.
Favorite thing about ITP Conference: Spending time with all of my fellow ITP warriors and hearing their stories.
Melissa HilsabeckHometown: Orange County, CA
ITP Warrior since: 2010
Daily Inspiration: Making people laugh and smile! You never know what someone else is going through so I believe a little smile can go a long way and laughter is the cure for everything.
ITP Survival Tip: Maintain an open communication relationship with your doctor so you feel just as involved in your treatment decision making process. Don't rush into anything you are uncomfortable with and research treatments before saying yes so you know they are right for you. Bonus Tip: PDSA has done all the research for you and they are available 24/7!
Favorite thing about ITP Conference: Seeing people from previous years continuing to stay involved in PDSA and sharing their experiences back in their hometowns. Having a meeting or putting on an event at least once a year really goes a long way. Hearing about them at the conference is very inspirational and serves as motivation to continually stay involved.
Kristin HuntHometown: Montreal, QC, Canada
ITP Warrior since: 2004
Daily Inspiration: Using my own experiences to help other patients with ITP is what motivates me every day. I will not rest until there is more research, more awareness and more support for this important cause.
ITP Survival Tip: Never let ITP stop you from doing what you love or achieving your goals! Having ITP is what inspired me to pursue medicine as a career so I can continue helping other patients. There are always ways to overcome even our greatest obstacles!
Favorite thing about ITP Conference: Getting to see all of the amazing people that make PDSA such a great support organization. I love seeing familiar faces year after year, but also getting to know new patients and learning about their ITP journey.
Dale PaynterHometown: Cambridge, Ontario, Canada
ITP Warrior since: 2010
Daily Inspiration: Adversity pushes us to do things in life we would have never imagined we could do. Now I look for opportunities to get our word out on behalf of those who can’t – any way, anyone, anywhere, anytime.
ITP Survival Tip: It is important that we do not let this condition be everything about us. We have to take care of ourselves and keep out of harm's way. But life is still about the pursuit of dreams – never let them go!
Favorite thing about ITP Conference: Over eight years, I have seen the faces of first time conference and regional meeting attendees (in three countries) who find out there are so many other REAL people on this journey and support is everywhere. You will never be alone again.
Dawn (ITP Mom) and John (ITP Warrior) Phillips Hometown: Elk Grove, CA
ITP Mom & ITP Warrior since: March 2014 when John was diagnosed and we have been raising awareness ever since.
Daily Inspiration:
Dawn: My son is an inspiration to me because he has been through so much and has come through it all a better person that is literally helping to save people's lives by encouraging donations of blood and blood products wherever he goes. He has had 530 donations in his name so far, simply amazing.
John: The look on people's faces when I share my story and they decide they want to start donating blood, platelets, or plasma.
ITP Survival Tip:
Dawn: Keep calm and know that other people understand what you are going through and are there to answer your questions.
John: Make time to take care of yourself.
Favorite thing about ITP Conference:
Dawn: I just love the staff, they have welcomed us like family members and are always supportive and looking out for things that might benefit us.
John: Knowing that I am not alone in my battle and talking with people who know exactly how I feel.
Barbara PruittHometown: Coral Gables, FL
ITP Warrior since: Fall 1961 - I have had ITP for almost my whole life.
Daily Inspiration: What motivates me to keep going? I don't know anything different. As I have gotten older, and maybe wiser, I feel that God isn't finished with me yet. I still have work to do here. I feel that helping others navigate the turbulent waters of ITP is my honor, and I am happy to do so.
ITP Survival Tip: When someone is diagnosed with ITP, I advise them to not focus solely on the platelet count number. That it is important to consider how you are living with a low platelet count. What are your symptoms? Do you have active bleeding? Petechiae? Are you bruising more or less? And how is the treatment affecting you? Your doctor needs to consider all of these issues before recommending a change in treatment.
Favorite thing about ITP Conference: the feeling of "kindred spirits" among the ITP patients. We know what it is like to walk in each other's shoes. No explanations needed. And for the weekend we are surrounded by people who care about ITP patients and want to make their journey easier. When I leave the conference each year I always feel loved, like I've been given a BIG hug!
Beth SiegelbaumHometown: Norwalk, CT
ITP Warrior since: 1995-ish
Daily Inspiration: My love of life and people.
ITP Survival Tip: Don't focus on the numbers. Symptoms are much more important and for goodness sake, don't panic over changes of a few thousand. Platelet counts fluctuate normally.
Favorite thing about ITP Conference: Connecting with people who understand and having access to the greatest ITP doctors and latest information.
Joe WinterHometown: Mahtomedi, MN
ITP Warrior since: 2015
Daily Inspiration: Seeing world and culture changes.
ITP Survival Tip: Get your rest and continue to do normal things!
Favorite thing about ITP Conference: Getting together with the ITP family.
This year's event will take place at the Rock & Roll Hall of Fame, with a special invitation extended to family and friends here in the Cleveland area! The evening will feature a live band, dancing, distinctive fare, cash bar and inspiring journeys. The Rock Hall will be open exclusively to PDSA for this private event and admission includes unrestricted access to the museum and all exhibits with private viewings of The Power of Rock Experience!
Date: Saturday, July 14, 2018
Location: Rock & Roll Hall of Fame, 1100 E 9th St, Cleveland, OH 44141
Tickets: $50 per person Pre-Registration Required
Museum Entrance Begins: 8:00pm
Private Party Begins: 9:00pm Doors Will Be Closed Between 9-9:30 pm
Additional Information: Ticket includes a unique selection of hearty appetizers, delectable desserts, non-alcoholic beverages and full access to the entire museum and all exhibits. The Gift Shop (located on Level 1) closes at 9:30pm. Cash bar available. Cash & credit cards accepted. ATM available on site.
The Platelet Disorder Support Association was patient-founded in 1998 to educate and empower those with immune thrombocytopenia and other platelet disorders. Today, PDSA is a powerful force serving and unifying the global ITP community of patients, practitioners, caregivers, advocates and key disease stakeholders.
You may click on any of the thumbnail images below to view the photo in a larger size.
8:00 AM: Pump It Up For Platelets! Hike & Seek
3:30 — 6:00 PM: Registration/Exhibits Open
5:00 — 5:15 PM: Welcome
5:15 — 6:45 PM: Concurrent Sessions
6:45 — 7:00 PM: Dinner Registration
7:00 — 8:00 PM: Educational Dinner Program
8:00 — 9:00 PM: The Immune System Strikes Back & 20+ Years of ITP: Take the Jeopardy Challenge
8:00 — 9:00 AM:
9:00 — 10:00 AM: 20 Years of ITP: What Has Changed Over the Last 2 Decades
10:00 — 10:15 AM: Break
10:15 — 11:30 AM: Inquire & Inspire: patients ask the experts & share personal journeys (small group sessions)
11:30 - 11:45 AM: Break
11:45 — 12:45PM: Concurrent Sessions
12:45 — 1:45 PM: Lunch Break with PDSA Medical Advisors
1:45 — 2:45 PM: Consideration for Treating ITP in the Future
2:45 — 3:00 PM: Break
3:00 — 4:00 PM: Inquire & Inspire: patients ask the experts & share personal journeys (small group sessions)
4:00 — 4:15 PM: Break
4:15 — 5:15 PM: PDSA-Patient Centered Research: emergency management of bleeding in ITP and predicting acute and chronic ITP
5:15 — 5:30 PM: Announcements
5:30 — 9:30 PM: Break
9:30 — 11:30 PM: Saturday Evening Event
9:00 — 10:30 AM
10:30 — 11:30 AM: KEYNOTE: Stress Management & Resilience: How to be Your Best Self While Living with Chronic Disease
11:30 — 11:45 AM: Break
11:45 — 12:45 AM: Living with ITP - Patients share their stories
12:45 AM — 1:00 PM: Closing Remarks
*A separate track for teens and young adults will run Friday & Saturday
**Agenda and speakers subject to change
This year, PDSA hosted its 18th annual update on immune thrombocytopenia (ITP) for patients, caregivers and the medical community in Cleveland Ohio - July 13-15. This year’s patient conference took place at the brand-new Hilton Cleveland Downtown.
A highlight to this weekend was PDSA’s 20th anniversary party on Saturday evening, July 14, at the Rock and Roll Hall of Fame and Museum. PDSA understands how important it is to offer patients and families respite from dealing with the ongoing challenges of a chronic illness by bringing a little joy and laughter into their lives.View Conference Photos View Photo Booth Photos
“Great conference. Really appreciated it. Good opportunity to speak with experts and other people with ITP.”
“This was an extraordinary weekend! Beginning to end! Calming setting. Informative & great to meet other patients. The staff is incredible! I am going to share with my hematologist and take better charge of my treatment options. Your hard work and efforts were truly recognized and appreciated! So happy to have the PDSA website for knowledge and support – I don’t feel so alone…”
“As a first time attendee, I received the full scope of ITP knowledge.”
“Thank you for all of your hard work. This is such a great opportunity to connect with others, increase our knowledge and renew our hope and commitment to a better quality of life. Thank you! Thank you! Thank you!”
“Thank you for all you do! The scholarships and grants are wonderful!”
“Enjoyed all, especially breakout groups and discussions.”
“Thank you, doctors and staff, for your time and care in making this information public.”
“Even though it was our first time attending, we felt welcomed and were very touched by the comradery of the patients and their family members.”
“Thank you for all your hard work. It surely shows, by the successful results.”
This year’s keynote speaker Francoise Adan, MD will present the program, “Stress Management & Resilience: How to be Your Best Self While Living with Chronic Disease.” Dr. Adan is the Endowed Connor Chair of Integrative Medicine at University Hospitals in Cleveland, and the recipient of the Christopher M. & Sara H. Connor Master Clinician in Integrative Health. She is also an assistant Professor at Case Western Reserve University Medical School and a member of the Steering Committee for the Medical School Women’s Faculty. One area of expertise for Dr. Adan is anxiety disorders. In more than 25 years of practicing medicine, Dr. Adan has always practiced mind/body medicine, encouraging clients and patients to understand the connection between the mind, the body and the spirit. In her early years of medical practice she was quick to recognize the limitations of traditional medicine and to embrace the benefits of practicing with a more integrative approach, becoming a champion of holistic wellbeing. Trained in psychiatry and board certified in Holistic and Integrative medicine, Dr. Adan specializes in three areas: stress management, work/life balance and the mind/body/spirit connection. Dr. Adan writes that she has witnessed and been impacted by the resilience of more than 4,000 patients and clients during her career, never ceasing to be amazed at the courage individuals possess to transform their own lives.
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.
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 auto-immune thrombocytopenic purpura (ITP). Dr. Gernsheimer serves on the PDSA Board of Medical Advisors.
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. Dr. Kessler also serves on the PDSA Board of Medical Advisors.
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 and Chief of Hematology at the Massachusetts General Hospital. 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 groundbreaking research into the development of effective thrombopoietic agents. Dr. Kuter also serves on the PDSA Board of Medical Advisors.
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 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. Dr. Lambert serves on the PDSA Board of Medical Advisors.
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 NorrisComprehensiveCancerCenter 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 AngelesCounty - University of Southern California Medical Center. Dr. Liebman completed a research fellowship at TuftsUniversity - New EnglandMedicalCenter, Boston, MA, and held faculty positions at TuftsUniversity and BostonUniversity, 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. Dr. Liebman also serves on the PDSA Board of Medical Advisors.
Dr. Keith McCrae is a physician-scientist and Director of Hematology at Cleveland Clinic. He received his MD degree and training in internal medicine at Duke University, and subsequently trained in Hematology at the University of Pennsylvania. He was a faculty member at the University of Pennsylvania, Temple and Case Western before joining the Cleveland Clinic in 2010. In addition to patient care, he maintains active clinical and laboratory-based research programs. His clinical interests include ITP, the antiphospholipid antibody syndrome, and several other hematologic disorders. His laboratory focuses on platelets, immune-mediated endothelial cell activation, and mechanisms of thrombosis in patients with cancer. He is active in many programs of the American Society of Hematology, and is Deputy Editor of the annual ASH Education book. He is also a frequent grant reviewer at the National Institutes of Health.
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 was a Senior Staff Scientist and Head of the Toronto Platelet Immunobiology Group at the Keenan Research Centre for Biomedical Sciences. He was also a Professor in the Departments of Pharmacology, Medicine and Laboratory Medicine and Pathobiology at the University of Toronto and an Adjunct Scientist with Canadian Blood Services. He joined Lund University in 2016 as a Professor of Transfusion Medicine of St. Michael’s Hospital. Dr. Semple has published over 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. Dr. Semple also serves on the PDSA Board of Medical Advisors.
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. Dr. Tarantino serves on the PDSA Board of Medical Advisors.
Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003 | pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.
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IMPORTANT!
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.