Pat Corley is a retired nurse coordinator for an NIH sickle cell center. She is also patient advocate and educator. She has worked with sickle cell patients as a nurse and volunteer for nearly 40 years. She is dedicated to educating health professionals, medical school students, and the public about the grave misconceptions about the devastating disease, as well as empowering patients to live their healthiest lives. In 1979, while she was volunteering at a camp for SCD patients, Pat Corley, then a nurse manager at the Los Angeles and University of Southern California Medical Center, caught the attention of a noted hematologist, who was so impressed that he tapped her to become nurse coordinator for an NIH SCD center. Some 38 years later, Corley is still in the game, doing the work she says she loves most - educating health professionals, medical school students, and the public about grave misconceptions about the disease, all while empowering patients to live their healthiest lives. Her many projects have included the “Unveil Sickle Cell” campaign, sitting on the NIH Focus Groups committee, the International Association of Sickle Cell Nurses and Professional Associates committee, and the Children’s Hospital of Los Angeles Group committee. Representative Publications: Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia Development and validation of SIMS: an instrument for measuring quality of life of adults with sickle cell disease Online profile

Allan Platt has served as co-founder and designer, of the scinfo.org since its inception in 1997. Allan co-authored a patient guide book on sickle cell disease and trait titled 'Hope and Destiny', a Patient and Parents guide to Sickle Cell Disease, which was distributed by Hilton Publishing in its fourth edition in 2016. He is also a co-author of Overcoming Pain, a guide regarding chronic pain, its causes, diagnoses, and treatments through modern, cutting-edge, and alternative medicines (published in September 2006); and author of Evidence Based Medicine for PDAs: A Guide for Practice Published by Bartlett and Jones March 2008. He is also the editor of the monthly sickle cell e-newsletter that reaches over 5,000 people worldwide that provides news and research on sickle cell. Allan advocates for sickle cell patients by sharing and encouraging other sickle cell centers to update their sickle cell care models to a 24/7 facility center that provides episodes intervention as well as case management care. Allan Platt graduated with a BS in Health Systems Engineering from the Georgia Institute of Technology in 1977. He completed a BS in Medical Science from the Emory University School of Medicine, Physician Assistant program, and a Masters of Medical Science in Career Physician Assistant from Emory. From 1984 until 2004 he was Program Coordinator, and Physician Assistant at the Georgia Comprehensive Sickle Cell Center at Grady Health System.   Representative Publications: Treating sickle cell pain: an update from the Georgia comprehensive sickle cell center Online profile

Vence Bonham received his bachelor of Arts from James Madison College at Michigan State University and his juris doctor degree from the Moritz College of Law at the Ohio State University. Mr. Bonham was a fellow in the American Association of Medical Colleges Health Services Research Fellowship Program. Mr. Bonham was a faculty member at Michigan State University in the Colleges of Medicine and Law. Since 2003, Mr. Bonham has served as an associate investigator in the National Human Genome Research Institute (NHGRI) within the Division of Intramural Research's Social and Behavioral Research Branch. He leads the Health Disparities Genomics Unit, which conducts research that evaluates approaches to integrating new genomic knowledge and precision medicine into clinical settings without exacerbating inequities in healthcare delivery. His research focuses primarily on the social influences of new genomic knowledge, particularly in communities of color. He studies how genomics influences the use of the constructs of race and ethnicity in biomedical research and clinical care and the role of genomics in health inequities. Mr. Bonham also serves as the senior advisor to the NHGRI director on genomics and health disparities.   Representative Publications: Framing the research agenda for sickle cell trait: building on the current understanding of clinical events and their potential implications Screening student athletes for sickle cell trait--a social and clinical experiment Sickle cell disease related pain: crisis and conflict Online profile

Dr. Frelinger is Assistant Professor of Pediatrics at Harvard Medical School and Associate Director of the Center for Platelet Research studies at Boston Children’s Hospital. Dr. Frelinger also holds a joint appointment at the Dana-Farber Cancer Institute. Dr. Frelinger is currently a co-chairman of the Platelet Physiology Scientific Subcommittee of the Scientific and Standardization Committee (SSC), International Society on Thrombosis and Haemostasis (ISTH). He has authored more than 80 peer-reviewed original research articles and has been an invited speaker at national and international meetings on the topic of platelet biology and antiplatelet agents. For more than 25 years the focus of Dr. Frelinger’s research has been translational studies, combining basic and clinical research, related to platelets and thrombosis. He discovered novel epitopes whose exposure is modulated by ligand binding (ligand-induced binding sites or LIBS) on the cell adhesion receptor glycoprotein IIb-IIIa (GPIIb-IIIa). His work has focused on investigations of basic platelet biology, development of platelet-related therapeutics, and evaluation of anti-platelet therapy through clinical trials. His research interests include 1) antiplatelet therapy as a treatment modality for sickle cell disease 2) the effects of thrombopoietin mimetics on platelet activation, 3) novel diadenosine tetraphosphate analogs with dual specificity for platelet P2Y1 and P2Y12 ADP receptors for their potential as anti-platelet drugs, 4) platelet function as a contributor to bleeding in immune thrombocytopenia, 5) platelets as models of neurons, and 6) induced pluripotent stem cell-derived platelets for therapeutic applications.   Representative Publications: The effect of prasugrel on ADP-stimulated markers of platelet activation in patients with sickle cell disease A phase 1 study of prasugrel in patients with sickle cell disease: effects on biomarkers of platelet activation and coagulation Platelet activation and inhibition in sickle cell disease (pains) study A double-blind, randomized, multicenter phase 2 study of prasugrel versus placebo in adult patients with sickle cell disease A phase 1 study of prasugrel in patients with sickle cell disease: pharmacokinetics and effects on ex vivo platelet reactivity Online profile

Patrick C. Hines, MD, PhD is an experienced pediatric critical care physician (general and cardiac) and a vascular biology research scientist. He is also the Founder and CEO of Functional Fluidics, a startup company developing clinical bioassays to measure blood function during simulated flow with microliters of whole blood. This technology is being adopted by pharmaceutical companies, clinicians, and research scientists to evaluate new therapies for red blood cell disorders such as sickle cell disease, coagulation disorders, and cancer. Dr. Hines was selected to the inaugural class of the Aspen Global Leadership Network’s Health Innovators Fellowship. He was the Chairman of the board of directors for the SNMA in the past. Areas of Interest: Role of beta-adrenergic stimulation in erythrocyte adhesion to the pulmonary vasculature; mechanisms of sickle erythrocyte adhesion Representative Publications: Central nervous system events in children with sickle cell disease presenting acutely with headache TR2/TR4 overexpression in a humanized sickle cell disease mouse model decreases RBC adhesion to VCAM-1 Epinephrine acts through erythroid signaling pathways to activate sickle cell adhesion to endothelium via LW-alphavbeta3 interactions Novel epinephrine and cyclic AMP-mediated activation of BCAM/Lu-dependent sickle (SS) RBC adhesion Online profile

Simon Dyson is Professor of Applied Sociology and is Director of the Unit for the Social Study of Thalassaemia and Sickle Cell at De Montfort University in the United Kingdom. His research interests include all social aspects of the world’s leading genetic conditions, sickle cell thalassaemia. He has had seven books published, including Ethnicity and Screening for Sickle Cell and Thalassaemia; Sickle Cell and Deaths in Custody (with Gwyneth Boswell) and Genetics and Global Public Health: Sickle Cell and Thalassaemia (with Karl Atkin). He has written numerous articles on the social and political aspects of sickle cell, including such topics as the politics of racism and sickle cell; the experiences of young people with sickle cell, sickle cell and school education, and sickle cell in Africa. He is a scientific advisor to the UK Sickle Cell Society and has spoken on sickle cell at international conferences in North America, Europe and Africa.   Representative Publications: Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair Narrative as re-fusion: Making sense and value from sickle cell and thalassaemia trait Living with sickle cell disease and depression in Lagos, Nigeria: A mixed methods study Patient experience. Improve access to SCD services Sickle cell and thalassaemia: global public health issues come of age Online profile

Dr. Kutlar has served Augusta University since 1982 where he has made major contributions to clinical care, basic science, clinical research, and educational activities. He is a graduate of Ankara University Medical School in Ankara, Turkey. He completed his residency and one year as chief resident and fellowship in internal medicine/hematology at Istanbul University Medical School in Istanbul, Turkey. Following clinical and research fellowships in Turkey, a Special Fellow in the Department of Laboratory Hematology at the Cleveland Clinic in Cleveland, and as a Research Fellow at the Medical College of Georgia, he joined the faculty at the Medical College of Georgia as an Associate Professor in 1992. Dr. Kutlar practices hematology with a focus on benign hematology and is an active member of the American Society of Hematology. He has served and continues to serve on state and NIH committees. Dr. Kutlar is currently the Co-PD/PI of the multi-institutional National Institute of Minority Health and Health Disparities Southeastern Exploratory Sickle Cell Center of Excellence as well as the Co-PD/PI of the National Heart, Lung, and Blood Institute’s Excellence in Hemoglobinopathies Research Award. He has completed more than 20 industry sponsored trials and federally funded projects, is working on two investigator initiated projects, and has brought to Augusta University an excess of nine million dollars in research support. Dr. Kutlar has 200 original articles, two book chapters, and 177 abstract presentations.   Representative Publications: Crizanlizumab for the Prevention of Pain Crises in Sickle Cell Disease Hydroxycarbamide in very young children with sickle-cell anaemia: a multicentre, randomised, controlled trial (BABY HUG) Hydroxycarbamide versus chronic transfusion for maintenance of transcranial doppler flow velocities in children with sickle cell anaemia-TCD With Transfusions Changing to Hydroxyurea (TWiTCH): a multicentre, open-label, phase 3, non-inferiority trial Improvements in haemolysis and indicators of erythrocyte survival do not correlate with acute vaso-occlusive crises in patients with sickle cell disease: a phase III randomized, placebo-controlled, double-blind study of the Gardos channel blocker senicapoc (ICA-17043) Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia The risks and benefits of long-term use of hydroxyurea in sickle cell anemia: A 17.5 year follow-up Online profile

Jo Howard, MB BChir, MRCP, FRCPath, became a consultant at Guy's and St Thomas' NHS Foundation Trust, in 2007, and is now Head of the red cell/sickle cell service. She was a consultant at Central Middlesex Hospital (North West London Hospitals) earlier where she ran their sickle cell service. Jo receives referrals for patients with complications of sickle cell disease from all over the UK. She has lectured on sickle cell disease at national conferences, including the British Society of Haematology, Royal College of Pathology, Royal College of Obstetrics and Gynaecology and British Thoracic Society. She is involved in several research projects in sickle cell disease and has published in this area. Jo is on the steering committees for the UK Forum for Haemoglobin Disorders, the National Haemoglobinpathy Registry and the British Committee for Standards in Haematology (General Haematology) and is the lead for Adult Peer Review for haemoglobinopathies.   Representative Publications: A prospective diary study of stuttering priapism in adolescents and young men with sickle cell anemia: report of an international randomized control trial--the priapism in sickle cell study Cost-effectiveness analysis of preoperative transfusion in patients with sickle cell disease using evidence from the TAPS trial Pregnancy outcome in patients with sickle cell disease in the UK--a national cohort study comparing sickle cell anaemia (HbSS) with HbSC disease Hydroxyurea (hydroxycarbamide) for sickle cell disease The Transfusion Alternatives Preoperatively in Sickle Cell Disease (TAPS) study: a randomised, controlled, multicentre clinical trial Adverse maternal and perinatal outcomes in pregnant women with sickle cell disease: systematic review and meta-analysis The utility of thromboelastography and thrombin generation in assessing the prothrombotic state of adults with sickle cell disease   Online profile

As director of Duke’s sickle cell transition program, Dr. Nirmish Shah's practice and research focuses on treating children and adults with sickle cell disease. When he works with children, he tries to focus on teaching them about their condition and how to transition successfully to living with the disease as an adult. For all patients, he focuses on providing the medical, social and psychological support they need to remain healthy. His research aims to increase engagement of sickle cell patients with their own care using mobile technology. Through the use of applications, he is hoping to help patients, specifically children, better manage their symptoms and medications.   Representative Publications: Trends in Sickle Cell Disease-related Priapism in U.S. Children's Hospitals Attitudes of Primary Care Physicians Toward Sickle Cell Disease Care, Guidelines, and Comanaging Hydroxyurea With a Specialist Challenges in Shifting Management Responsibility From Parents to Adolescents With Sickle Cell Disease Differences in pain management between hematologists and hospitalists caring for patients with sickle cell disease hospitalized for vasoocclusive crisis Sickle cell disease is associated with iron mediated hypercoagulability Online profile

Dr. Vivien Sheehan is a pediatric and adult hematologist specializing in sickle cell disease (SCD). Her clinical interests include: sickle cell disease, the treatment of hemoglobin in patients with sickle cell disease, and transitioning chronically ill pediatric patients to adult subspecialty care. Dr. Vivien Sheehan is a member of the Sickle Cell Program in the Hematology Center at Texas Children's Hospital. She is board certified in internal medicine, pediatrics, IM hematology, and pediatric hematology/oncology.   Representative Publications: The role of BCL11A and HMIP-2 polymorphisms on endogenous and hydroxyurea induced levels of fetal hemoglobin in sickle cell anemia patients from southern Brazil Original Research: Use of hydroxyurea and phlebotomy in pediatric patients with hemoglobin SC disease Whole exome sequencing identifies novel genes for fetal hemoglobin response to hydroxyurea in children with sickle cell anemia Transcranial Doppler velocity and brain MRI/MRA changes in children with sickle cell anemia on chronic transfusions to prevent primary stroke Genetic modifiers of sickle cell anemia in the BABY HUG cohort: influence on laboratory and clinical phenotypes Online profile