Dr. Amber Yates is an Associate Director of the Pediatric Hematology-Oncology Fellowship Program. She is also Co-Director of the Sickle Cell Program, a member of the Hematology Center and Associate Professor Of Pediatrics at Baylor College of Medicine. Her primary clinical interest is in the care of children with sickle cell disease and other hemoglobin disorders. She is particularly interested in the role of hydroxyurea therapy in improving the lives of children with sickle cell disease, as well as the long term safety and efficacy of hydroxyurea. Her other clinical interests include: hemoglobinopathies and hemolytic anemia. Dr. Amber Yates is also interested in assisting teenage patients with hematologic disorders so they can achieve a successful transition to adult care.   Representative Publications: Hydroxyurea treatment of children with hemoglobin SC disease Simultaneous acute splenic sequestration and transient aplastic crisis in children with sickle cell disease Online profile

Lamia P. Barakat, PhD, is the Director of Psychosocial services in oncology at The Children’s Hospital of Philadelphia. She coordinates psychosocial programs for CHOP’s Division of Oncology. In her role as Director of Psychosocial Services in Oncology, she coordinates services and programming offered by a multidisciplinary team of social workers, child life specialists, creative arts therapists, hospital school teachers, and psychologists with the aim of implementing evidence-based practice to effectively help children and their families navigate the diagnosis and treatment process.   Representative Publications: Acceptability of In Utero Hematopoietic Cell Transplantation for Sickle Cell Disease Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research Lessons Learned From a Randomized Controlled Trial of a Family-Based Intervention to Promote School Functioning for School-Age Children With Sickle Cell Disease Insurance status as a sociodemographic risk factor for functional outcomes and health-related quality of life among youth with sickle cell disease The Development of a Culturally Sensitive Pediatric Pain Management Intervention for African American Adolescents With Sickle Cell Disease Coping and coping assistance among children with sickle cell disease and their parents Online profile

Dr. Hoppe is a senior clinician and scientist in the Hematology/Oncology Division and one of the leaders of the Hemoglobinopathy Center. As medical director of the Hemoglobinopathy Reference Laboratory at UCSF BCHO, Dr. Hoppe has interests in public health research and is involved in several CDC-sponsored projects to build diagnostic laboratory capacity for universal newborn screening and improved surveillance of hemoglobin disorders internationally. Dr. Hoppe’s research interests have focused on clinical and translational studies in sickle cell disease (SCD). Her research career started by investigating genetic modifiers of stroke using samples from children enrolled in the multi-institutional Cooperative Study of Sickle Cell Disease (CSSCD) and the Stroke Prevention Trial for Sickle Cell Anemia (STOP). She has applied novel genotyping assays to identify potential risk-conferring genes in SCD. She collaborated on several projects using high-density genotyping and genome sequencing to identify genetic determinants of disease severity and Hb F response to hydroxyurea. As part of the NHLBI REDS-III project, she is identifying molecular determinants of alloimmunization and response to transfusion. Dr. Hoppe is actively involved in both investigator-initiated and industry-sponsored clinical trials in SCD. These studies include a phase 1/2 trial investigating the potential clinical efficacy of simvastatin in SCD and a global phase 3 clinical trial evaluating the efficacy of the platelet inhibitor, prasugrel, in preventing vaso-occlusive pain events in children with sickle cell disease.   Representative Publications: A Multinational Trial of Prasugrel for Sickle Cell Vaso-Occlusive Events Real-time dose adjustment using point-of-care platelet reactivity testing in a double-blind study of prasugrel in children with sickle cell anaemia Successful utilization of an electronic pain diary in a multinational phase 3 interventional study of pediatric sickle cell anemia Prasugrel for Sickle Cell Vaso-Occlusive Events Inflammatory mediators of endothelial injury in sickle cell disease Design of the DOVE (Determining Effects of Platelet Inhibition on Vaso-Occlusive Events) trial: A global Phase 3 double-blind, randomized, placebo-controlled, multicenter study of the efficacy and safety of prasugrel in pediatric patients with sickle cell anemia utilizing a dose titration strategy Online profile

Robert I. Liem is Associate Professor of Pediatrics at Northwestern University, Feinberg School of Medicine. His clinical interests center on hemoglobin disorders, including pediatric and adult sickle cell disease and thalassemia. He is also a clinical investigator with active research programs in these areas. His major research interests focus on exercise responses, inflammation and vascular function as well as their impact on cardiopulmonary fitness, clinical outcomes and physical functioning in children and young adults with sickle cell anemia. He is also the principal investigator of several other protocols at Lurie Children's Hospital that are aligned with his interests in exercise physiology, free-living physical activity, habitual exercise patterns and aerobic training in this population. Other areas of clinical and research focus include transition to adult care, patient-centered medical homes, health disparities and parental decision making regarding research participation in sickle cell disease and thalassemia.   Representative Publications: Assessing cardiac and liver iron overload in chronically transfused patients with sickle cell disease Health-related quality of life in children with sickle cell anemia: impact of blood transfusion therapy Red blood cell transfusions during sickle cell anemia vaso-occlusive crises: a report from the magnesium in crisis (MAGiC) study Association of Sickle Cell Trait With Hemoglobin A1c in African Americans Determining the longitudinal validity and meaningful differences in HRQL of the PedsQL™ Sickle Cell Disease Module Barriers to hydroxyurea adherence and health-related quality of life in adolescents and young adults with sickle cell disease Opioid prescription practices at discharge and 30-day returns in children with sickle cell disease and pain Online profile

Dr. Novelli obtained his MD degree from the University of Milan, Italy in 1996. He was a postdoctoral fellow at Johns Hopkins University from 1996 to 1999 where he developed expertise in cellular biology and gene therapy. Dr. Novelli's main areas of interest are sickle cell disease and disorders of hemostasis. Dr. Novelli holds a sickle cell disease and hemoglobinopathy clinic at the Hillman Cancer Center and a hemophilia and thrombosis clinic at the Hemophilia Center of Western Pennsylvania. In addition, he works as a member of the inpatient hematology consult service for several weeks of the year. Another longstanding interest of Dr. Novelli’s is in developing global health research and training initiatives in Tropical Hematology. Research Interests: One recent interest of Dr. Novelli's is elucidating the fundamental mechanisms underlying hemolysis-associated thrombosis and vascular dysfunction in SCD. Patients with SCD suffer from severe chronic hemolytic anemia and acute episodes of RBC trapping and destruction in the microvasculature (vaso-occlusive crises). Dr. Novelli's current research project explores the role of Thrombospondin-1 (TSP1), a glycoprotein abundantly present in platelet α-granules which is emerging as a key regulator of hemostasis and thrombosis.   Representative Publications: Rates and risk factors of hypertension in adolescents and adults with sickle cell anaemia in Tanzania: 10 years' experience Pulmonary embolism in sickle cell disease: a case-control study Crises in Sickle Cell Disease The association of smartphone-based activity space measures with cognitive functioning and pain sickle cell disease Thrombospondin-1 gene polymorphism is associated with estimated pulmonary artery pressure in patients with sickle cell anemia Can Neuroimaging Markers of Vascular Pathology Explain Cognitive Performance in Adults With Sickle Cell Anemia? A review of the Literature Online profile

Dr. Onyinye Onyekwere is a pediatric hematologist-oncologist in the Washington, DC metropolis (Maryland and District of Columbia). She specializes in General Pediatric, Hematology & Oncology, Pediatric Anemia and Red Blood Cell Hematology. She received her medical degree from Michigan State University College of Human Medicine, and has been in practice for 19 years. Prior to starting Advanced Neighborhood Pediatrics, Dr. Onyekwere completed her pediatric hematology oncology fellowship at the St Jude's Children Research Hospital, and Children's Hospital of Boston and the Dana-Farber Cancer Institute in Boston, MA, and was a staff at Howard University Hospital. Beyond education and experience, Dr. Onyinye Onyekwere is a very warm doctor with excellent bedside manner. Your loved ones will be well cared for in her clinic.   Representative Publications: Nitric oxide for inhalation in the acute treatment of sickle cell pain crisis: a randomized controlled trial Abnormal pulmonary function and associated risk factors in children and adolescents with sickle cell anemia Sickle cell vaso-occlusion causes activation of iNKT cells that is decreased by the adenosine A2A receptor agonist regadenoson Clinical correlates of acute pulmonary events in children and adolescents with sickle cell disease Sickle cell disease (SCD), iNKT cells, and regadenoson infusion Markers of severe vaso-occlusive painful episode frequency in children and adolescents with sickle cell anemia Online profile

Marsha J. Treadwell, PhD, is a clinical psychologist and health services researcher with expertise in measurement development, community engagement, conducting health care quality improvement projects, evaluating programs and assessing the health related quality of life for individuals and communities. Dr. Treadwell’s research integrates physical, behavioral and psychological processes, allowing for the identification of risk and resiliency factors and the development of more effective interventions. Dr. Treadwell is working to broaden community support for sickle cell programs and has introduced intensive support strategies for families of children newly diagnosed with sickle cell disease. She is currently working to implement programs that identify and address barriers to quality of life and quality of care for youth and adults with sickle cell disease. Ultimately, Dr. Treadwell’s goal is to foster a sense of empowerment and partnership in disease management, that improves overall wellbeing for patients with sickle cell disease and their families.   Representative Publications: Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care Transition from pediatric to adult care in sickle cell disease: establishing evidence-based practice and directions for research Emergency department utilization by Californians with sickle cell disease, 2005-2014 Self-efficacy and readiness for transition from pediatric to adult care in sickle cell disease Barriers and facilitators to research participation among adults, and parents of children with sickle cell disease: A trans-regional survey Development of a sickle cell disease readiness for transition assessment A quality improvement initiative to improve emergency department care for pediatric patients with sickle cell disease Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research Online profile

Nurse Practitioner Melissa Claar, MA, RN, CPNP, helps lead the pediatric sickle cell disease treatment program at University of Minnesota Masonic Children's Hospital. Claar believes empowerment and education are crucial components of patient care. Claar, a care provider serving the pediatric sickle cell disease program at University of Minnesota Masonic Children’s Hospital, not only guides families through the difficult time, but engages them and encourages them to dive deep into education on sickle cell disease, so they can become partners in the care. This approach and Claar’s willingness to be a tremendous resource for families has helped the sickle cell disease program expand. Her desire to make a difference was the driving force for her interest in healthcare. Claar's passion has always been in helping others. Providing excellent comprehensive and compassionate care allows her to make something that is exceptionally difficult for patients and families a little easier. Online profile

A true pioneer for sickle cell advocacy, Dr. Sudam L. Kate, has dedicated a total of 36 years of his life to sickle cell in India. Dr. Kate has an extensive list of accomplishments regarding his work in research and patient care. His journey began in 1972 when a team of Russian anthropologists visited India with the aim to study genetic markers among tribal population groups from Maharashtra and selected the Pawara tribal groups from Sahada taluka of the Dhule district. While screening the Pawara tribal community for blood markers, he came across with few sickle cell trait carriers and one patient with sickle cell disease. This was a new and the first finding in that area. Throughout the course of his career, Dr. Kate remained active within the sickle cell community continuing his study on genetic disorders, organizing national symposiums on tribal healths, and organizing health camps in tribal areas of Maharashtra. In 1998, Dr. Kate established Sickle Cell Dawakhana, a sickle cell center that provided diagnoses, counseling and Ayurvedic treatment. To-date there have been 3204 patients diagnosed under the center's medical supervision. Dr. Kate plays an instrumental role at the Maharashtra Arogya Mandal (MAM) in Pune, an ayurvedic medical college. This center caters to the needs of tribal people in rural areas and has launched the Sickle Cell Anemia Project. Online profile

Rae Blaylark is a passionate and genuine person who is committed to continuous learning and improvement through a credible and patient approach that creates consistent and dependable results. She has outstanding communication skills, possessing the ability to connect with those she comes in contact with, both personally and professionally. She seeks to help others find their hidden strengths, their values and the necessary skills in order to become productive members in whatever they are called to do. Specialties: - Training & Education - Project Management & Redesign - Personal/Individual Improvement Plans - Corporate Training - Public Speaking - Community Involvement - Sickle Cell Education Online profile