Bukola Bolarinwa is a lawyer, Advocate, President of the Sickle Cell Aid Foundation (SCAF) and founder of Haima Health Initiative. She joined SCAF in 2011 at the Nigerian Law School in Bwari where it was set up by her friend Nkechi Azinge. They both had personal experiences with Sickle Cell and wanted an avenue to create greater awareness and support for people living with Sickle Cell Disease (SCD). Bukola lives with SCD and has also been lucky to have an excellent support system of family and health care providers but she knew this is not the case for majority of people in Nigeria. So she works together with an amazing team of staff and volunteers to carry out activities to raise awareness about SCD and aid those living with it. Bukola also started Haima Health Initiative because the Sickle cell beneficiaries often need blood transfusions. She, along with her team, started by calling their friends and families to donate at hospitals and as more people heard about them, they decided to help as many people as possible to get blood. Online profile

Spencer Wood is a certified genetic counselor who works with patients who are pregnant or considering pregnancy. He obtained his undergraduate degree from Virginia Tech and then a Master of Science in Genetic Counseling from University of South Carolina's School of Medicine. Spencer aims to be knowledgeable, friendly, and accessible to patients. He advocates for patients and ensures their needs are met, which may include referrals to other specialty services.  Board Certification - Genetic Counseling Specialties- OB/GYN- Maternal Fetal Medicine Clinical Interests- Genetic counseling - Preimplantation genetic diagnosis- Preconception counseling- Bioethics- Congenital birth defects- Down's syndrome- Cystic fibrosis- Sickle cell disease- Recurrent pregnancy loss- Pregnancy Online profile

Barbara P. Yawn, MD, MSc, FAAFP, is Adjunct Professor, Department of Family and Community Health at University of Minnesota. Dr. Yawn's research interests include the diagnostic process, women's health, and asthma identification and management. Dr. Yawn received her undergraduate degree in Physics from Massachusetts Institute of Technology and proceeded to medical school at University of Missouri, Columbia where she joined Alpha Omega Alpha Honor Medical Society. Dr. Yawn completed her residency in Family Medicine at University of Minnesota, Minneapolis; two years later, she received her Masters in Family Medicine and Public Health, and her Master of Science in Clinical Research Design and Statistics from University of Michigan, Ann Arbor. Since 1987, Dr. Yawn has published over 180 peer-reviewed articles, in addition to authoring and/or editing three books and producing a nationally syndicated radio health program. Her work appears in the Journal of the American Medical Association, Journal of Asthma, and Chest. Dr. Yawn has served as principal investigator for numerous clinical trials focused on physician-directed medication for asthma care, impact of spirometry testing in family medicine practices, and long-term trends in herpes zoster and varicella incidence.   Representative Publications: Management of Sickle Cell Disease: Recommendations from the 2014 Expert Panel Report Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members Evidence gaps in the management of sickle cell disease: A summary of needed research Online profile

Dr. Quinn is Associate Professor of clinical pediatrics at the University of Cincinnati College of Medicine and Cincinnati Children’s Hospital Medical Center. He has a long-standing interest in sickle cell anemia and thalassemia. He serves on the ASH Committee on Educational Affairs and on the Publications Committee. Dr. Quinn is one of the resident pediatric hematologists at Cincinnati Children’s Hospital Medical Center. Clinical Interests:Sickle cell disease; thalassemia; hemoglobinopathies; anemia; autoimmune hemolytic anemia; disorders of red blood cells; iron overload and iron chelation; chronic transfusion therapy; immune thrombocytopenia (ITP); neutropenia; stroke. Research Interests:Epidemiology, pathophysiology, treatment and prevention of brain injury (structural and cognitive) in sickle cell disease; measurement of red blood cell turnover in sickle cell disease; identification and treatment of cardiomyopathy and nephropathy in sickle cell disease; treatment and prevention of pain (VOC) in sickle cell disease; MRI methods of iron quantitation; new agents for immune thrombocytopenia (ITP) Representative Publications:Losartan for the nephropathy of sickle cell anemia: A phase-2, multicenter trialAssociation between diffuse myocardial fibrosis and diastolic dysfunction in sickle cell anemiaIncreased prevalence of potential right-to-left shunting in children with sickle cell anaemia and strokeBiochemical surrogate markers of hemolysis do not correlate with directly measured erythrocyte survival in sickle cell anemiaCardiomyopathy With Restrictive Physiology in Sickle Cell DiseaseAcute silent cerebral infarction in children with sickle cell anemiaControlled trial of transfusions for silent cerebral infarcts in sickle cell anemia Online profile

Dr. Brandow is a board certified pediatric hematologist/oncologist. She has a special interest in providing comprehensive and compassionate care for children with sickle cell disease and other hemoglobinopathies in addition to other hematologic diseases including children with anemia, thrombocytopenia and neutropenia. Dr. Brandow is specifically interested in developing better ways to assess and treat pain in children with sickle cell disease. She is committed to and enjoys teaching medical students, residents, and fellows to help them learn to provide comprehensive and compassionate care to their patients. Areas of interest: -Hematology -Sickle cell disease -BMT for sickle cell disease -Neuropsychological complications of sickle cell disease -Sickle cell disease new therapeutic agents -Thalassemia   Representative Publications: Impact of emergency department care on outcomes of acute pain events in children with sickle cell disease Sickle cell disease: a natural model of acute and chronic pain Clinical Interpretation of Quantitative Sensory Testing as a Measure of Pain Sensitivity in Patients With Sickle Cell Disease Early insights into the neurobiology of pain in sickle cell disease: A systematic review of the literature A Comparison of Pain Assessment Measures in Pediatric Sickle Cell Disease: Visual Analog Scale Versus Numeric Rating Scale Online profile

Dr. Griffin Rodgers, Director of the National Institutes of Health (NIH) National Institute of Diabetes and Digestive and Kidney Diseases, is an accomplished clinician, researcher, and mentor, and is a role model. His research interests include genetic diseases: sickle cell anemia, thalassemia, red cell enzymopathies; clinical evaluation of disease severity; treatment, including pharmacological alteration of gene expression and stem cell transplantation; molecular genetics of human hemoglobins; gene expression and differentiation in erythroid cells in normal and perturbed hematopoietic states; pharmacological alteration of gene expression; molecular genetics of myleodysplastic and myleoproliferative syndromes; hematopoiesis; role of inducible and stochastic factors; hematopoietic stem cell plasticity; identification of early markers of lineage-specific differentiation; the development of novel gene therapy strategies and their targeted application in cord blood hematopoietic stem cells. As a research investigator, Dr. Rodgers is widely recognized for his contributions to the development of hydroxyurea, the first effective—and now FDA approved—therapy for sickle cell anemia.   Representative Publications: Allogeneic hematopoietic stem-cell transplantation for sickle cell disease HbA2 : biology, clinical relevance and a possible target for ameliorating sickle cell disease Nonmyeloablative HLA-matched sibling allogeneic hematopoietic stem cell transplantation for severe sickle cell phenotype Fetal haemoglobin response to hydroxycarbamide treatment and sar1a promoter polymorphisms in sickle cell anaemia Hemolytic anemia-associated pulmonary hypertension in sickle cell disease Online profile

John F. Tisdale, MD graduated from the College of Charleston in South Carolina with a B.A. in chemistry in 1986. He then earned his M.D. from the Medical University of South Carolina in 1990. Dr. Tisdale is currently working on multiple strategies both in the laboratory and in the clinic to cure sickle cell disease by repairing or replacing the precursor bone marrow cells that give rise to sickled red blood cells. Dr. Tisdale has an active research program in trying to characterize tolerance and create conditions in which patients will more easily tolerate donor cells and tissues without the need for destroying the immune system or perpetual use of immunosuppressant drugs. Dr. Tisdale and his colleagues also have an ongoing research agenda to find a gene therapy strategy for SCD. This project is in an earlier phase of development, although accrual to a protocol testing this approach has begun.   Representative Publications: Allogeneic hematopoietic stem-cell transplantation for sickle cell disease At least 20% donor myeloid chimerism is necessary to reverse the sickle phenotype after allogeneic HSCT Measurements of red cell deformability and hydration reflect HbF and HbA2 in blood from patients with sickle cell anemia Bone Marrow as a Hematopoietic Stem Cell Source for Gene Therapy in Sickle Cell Disease: Evidence from Rhesus and SCD Patients Hydroxyurea-Increased Fetal Hemoglobin Is Associated with Less Organ Damage and Longer Survival in Adults with Sickle Cell Anemia Kinetic assay shows that increasing red cell volume could be a treatment for sickle cell disease Online profile

Patrick T. McGann, MD, is the Director of the new combined pediatric and adult sickle cell and hemoglobinopathy program at Rhode Island Hospital and its Hasbro Children’s Hospital. He is also a pediatric hematologist within the Pediatric Hematology/Oncology Program at Hasbro Children’s Hospital. Dr. McGann is an international sickle cell expert with a focus on improving the lives of individuals with sickle cell disease. Prior to joining the Lifespan team, he spent 8 years as a pediatric hematologist and sickle cell specialist at Cincinnati Children’s Hospital Medical Center. In addition to his clinical and research work in the United States, Dr. McGann does extensive work to address the global burden of sickle cell disease, particularly in the Republic of Angola, where he has worked for over 10 years. Dr. McGann has focused his extensive academic research on improving outcomes for children with sickle cell anemia throughout the United States and across the world. He has been the principal investigator on numerous research projects funded by the National Heart, Lung, and Blood Institute, the Doris Duke Charitable Foundation, and the American Society of Hematology.   Representative Publications: The pressing need for point-of-care diagnostics for sickle cell disease: A review of current and future technologies Stable-Isotope Dilution HPLC-Electrospray Ionization Tandem Mass Spectrometry Method for Quantifying Hydroxyurea in Dried Blood Samples Time to Invest in Sickle Cell Anemia as a Global Health Priority Development of a pharmacokinetic-guided dose individualization strategy for hydroxyurea treatment in children with sickle cell anaemia Hydroxyurea therapy for sickle cell anemia Online profile

Dr. Alex George is an Associate Professor at Wake Forest School of Medicine. He is board certified by the American Board of Pediatrics.     Representative Publications: Altered phosphorylation of cytoskeleton proteins in sickle red blood cells: the role of protein kinase C, Rac GTPases, and reactive oxygen species Losartan for the nephropathy of sickle cell anemia: A phase-2, multicenter trial Genetic Modifiers of White Blood Cell Count, Albuminuria and Glomerular Filtration Rate in Children with Sickle Cell Anemia 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 A Paper-Based Test for Screening Newborns for Sickle Cell Disease Validation of a Low-Cost Paper-Based Screening Test for Sickle Cell Anemia Liver iron concentration measurements by MRI in chronically transfused children with sickle cell anemia: baseline results from the TWiTCH trial Online profile

Dr. Cassandra D. Josephson is the Medical Director of the Blood, Tissue, and Apheresis Service at Children's Healthcare of Atlanta. She is also a Pediatric hematologist/oncologist who specializes in treating patients with hemostasis or thrombosis conditions. Her research focus is in transfusion medicine issues as they relate to pediatric hematology and hemostasis, specifically, with regard to sickle cell anemia, hemophilia, neonatology, and open heart surgery. Other Appointments/Positions: Assistant Professor, Pediatrics, Emory University School of Medicine Associate Professor, Department of Pediatrics, Emory Unversity School of Medicine Associate Professor, Pathology and Pediatrics, Laney Graduate School Attending Physician, Division of Pediatric Hematology/Oncology, Department of Pediatrics Pathology Division(s): Clinical Pathology   Representative Publications: Red blood cell minor antigen mismatches during chronic transfusion therapy for sickle cell anemia Impact of red blood cell alloimmunization on sickle cell disease mortality: a case series Immunophenotypic parameters and RBC alloimmunization in children with sickle cell disease on chronic transfusion Online profile