Dr. Jonassaint is a practicing clinical health psychologist with an MHS in cardiovascular epidemiology. He has clinical expertise in chronic disease self-management and cognitive behavioral therapy, and has had extensive experience working with patients from under-represented minority groups. He has primarily focused on working with adolescents and adults living with sickle cell disease (SCD), a condition that disproportionately affects those of African descent and is associated with significant disparities in both funding and treatment. In Dr. Jonassaint’s research, their group has been working on understanding how mobile phones can be used to improve patient mental health and pain outcomes. He is the co-inventor of an SCD specific self-management app called SMART: The Sickle Cell Disease Mobile Application to Record Symptoms via Technology. Testing of SMART has led to three publications and is now being used in four funded studies at three institutions.   Representative Publications: Understanding patterns and correlates of daily pain using the Sickle cell disease Mobile Application to Record Symptoms via Technology (SMART) A systematic review of the association between depression and health care utilization in children and adults with sickle cell disease The association of smartphone-based activity space measures with cognitive functioning and pain in sickle cell disease   Video Links: SickleShare App Developed by Students Working With Dr. Jonassaint at UPMC SMART CBT App Concept

TaLana Hughes is faculty member of Sickle Cell Disease Treatment Demonstration Program (SCDTDP) representing a parent/community-based organization (CBO), where she helps ensure the alignment of strategic goals, enables consistent team communication, participates in quarterly Oversight Steering Committee meetings, and contributes to project strategy decisions by sharing the patient/family/CBO perspective. She also chose the Sickle Cell Disease Association of Illinois (SCDAI). As part of SCDAI, she has dedicated herself to reaching out to communities throughout Illinois to support those with sickle cell disease. SCDAI hosts baby showers for parents of infants, support groups, presentations at community institutions like churches and schools, and other programs to teach families how to access resources and necessary treatments. She also works within the healthcare system and seek to improve how providers treat sickle cell disease. Having managed grants for SCDAI and its partners, advocated for government support in Springfield and on Capitol Hill, and developed partnerships with all of the sickle cell centers throughout the state, she hopes to help increase the number of providers who have the skill and experience to address these patients’ needs.

Gary A. Gibson has accumulated forty years of successful business and management experience during a career that includes various positions of authority in the private, public and not-for-profit sectors. His work in the public sector has given him the opportunity to be a two-time recipient of the state of Indiana's highest honor, the "Sagamore of the Wabash." His work in all sectors has given him the opportunity to learn a lot about people and the many needs that we all have, both individually and collectively.   Specialties: -Experienced executive with a track record of success in high level positions -Proficient communicator with strong persuasion and negotiating abilities -Collaborative team leader with proven team building skills -Effective Marketer with proven abilities to solve customer needs -Concerned citizen with a solid history of community involvement -Published author -Radio Show Host (Sickle Cell Action Network)

Yvonne M. Carroll, RN, JD is the Director of Patient Services in the Department of Hematology at St. Jude Children’s Research Hospital.  Yvonne graduated with a Bachelors of Nursing Degree from the University of Tennessee and a Law degree from the University of Cincinnati. She joined SJCRH in 1999 in the Department of Hematology and served in several positions before becoming the Director of Patient Services. Yvonne is active in Hematology and the sickle cell disease community and serves on the Governor’s Genetic Advisory Committee for the State of TN. Throughout the years, Yvonne has been a Principal Investigator and Program Manager on several sickle cell grants and has spoken in numerous venues on sickle cell disease. Yvonne has developed partnerships with several community organizations and rural healthcare workers to improve awareness and treatment for people with sickle cell disease. She serves as president of the International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) which recently became partners with the Sickle Cell Community Consortium and the Sickle Cell Disease Coalition.   Representative Publications: Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents Genetic education and sickle cell disease: feasibility and efficacy of a program tailored to adolescents Therapy preference and decision-making among patients with severe sickle cell anemia and their families

Ade Adeyokunnu manages the day-to-day operations of the community like interacting with members, collaborating with other community members, developing a content strategy to meet the community needs. He also manages and maintains existing social assets (Twitter) and identify opportunities to grow this footprint and leverage to grow community (traffic and engagement). Moreover, he applies business acumen to analyze the community activity and identify any improvement opportunities. Despite the trials of having sickle cell anemia, Ade completed his Bachelors degree in Computer Science and Masters degree in Information Technology. In 2009 he created sikcell.com, the first of its kind social network community for people living with sickle cell. He is currently a full time student at the McCombs School of Business, completing his MBA with a concentration in healthcare and hopes to solve some of the critical healthcare challenges faced by patients.

Dr. Rana is Professor of Pediatrics at Howard University and Director of Pediatric Hematology with primary focus on sickle cell disease. He has been providing care in a “medical home setting” to individuals with sickle cell disease for more than 30 years with an aim to provide all primary and specialty services at one site. He has conducted and participated in numerous studies related to sickle cell disease and advocated for individuals with sickle cell disease. He has organized seminars related to pain and stigma in sickle cell disease and produced many videos related to pain. He has been listed among the best doctors in America numerous times and he is a recipient of several awards from the sickle cell community and other institutions.   Representative Video: Fighting the Stigma: Pain in Sickle Cell Disease - Elise 3   Representative Publications: Medical neglect by underprescription and underutilization of hydroxyurea in children with sickle cell disease Pharmacogenetics of morphine: potential implications in sickle cell disease Hydroxyurea and growth in young children with sickle cell disease Prospective echocardiography assessment of pulmonary hypertension and its potential etiologies in children with sickle cell disease Hydroxycarbamide in very young children with sickle-cell anaemia: a multicentre, randomised, controlled trial (BABY HUG) Markers of severe vaso-occlusive painful episode frequency in children and adolescents with sickle cell anemia Differences in the clinical and genotypic presentation of sickle cell disease around the world Effect of hydroxyurea treatment on renal function parameters: results from the multi-center placebo-controlled BABY HUG clinical trial for infants with sickle cell anemia

Dr. Hassell provides inpatient and outpatient care to adults with sickle cell disease at the University of Colorado Hospital. She is a site principal investigator for multi-center clinical trials for adults with sickle cell disease, and has provided national leadership on study steering and executive committees. Dr. Hassell has led several regional projects through the Mountain States Genetics Regional Collaborative Center, and serves on the Newborn Screening Advisory Committee for the Colorado State Department of Health. She also sits on the steering committees of a number of national projects including the Sickle Cell Disease Treatment Demonstration Project for HRSA, the American Society of Hematology’s Public Health Taskforce, and the Registries and Surveillance for Hemoglobinopathies (RuSH) Project for the CDC and NIH.   Representative Publications: Sensitivity of alternative measures of functioning and wellbeing for adults with sickle cell disease: comparison of PROMIS® to ASCQ-Me℠ AAPT Diagnostic Criteria for Chronic Sickle Cell Disease Pain Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care Effects of hydroxyurea treatment for patients with hemoglobin SC disease The evaluation of a new apheresis device for automated red blood cell exchange procedures in patients with sickle cell disease Hospitalization for pain in patients with sickle cell disease treated with sildenafil for elevated TRV and low exercise capacity

Dr. Lewis Hsu is a pediatric hematologist dedicated to finding cures for sickle cell disease, and improving treatment and education until cures can be found.  He joined UIC as pediatric director of the Sickle Cell Center and Professor of Pediatrics in July 2011. His clinical and translational research experience include multicenter landmark clinical trials of sickle cell stroke prevention and bone marrow transplantation, and contributing to understanding of inflammation and nitric oxide in mouse models of sickle cell disease.  He has published over 70 peer-reviewed papers, mentored numerous physicians and graduate students, and contributed to 4 sickle cell websites devoted to patient education.   Representative Publications: Community Health Workers as Support for Sickle Cell Care Adverse Reactions to Pneumococcal Vaccine in Pediatric and Adolescent Patients with Sickle Cell Disease IMPROVE trial: a randomized controlled trial of patient-controlled analgesia for sickle cell painful episodes: rationale, design challenges, initial experience, and recommendations for future studies Nitric oxide for inhalation in the acute treatment of sickle cell pain crisis: a randomized controlled trial Tapered oral dexamethasone for the acute chest syndrome of sickle cell disease Enhanced pulmonary and systemic response to endotoxin in transgenic sickle mice Hemolysis in sickle cell mice causes pulmonary hypertension due to global impairment in nitric oxide bioavailability Pulmonary, gonadal, and central nervous system status after bone marrow transplantation for sickle cell disease Evidence-based interventions are necessary but not sufficient for achieving outcomes in each setting in a complex world: empowerment evaluation, getting to outcomes, and demonstrating accountability

Lanetta Bronté-Hall, MD, MPH, MSPH, is responsible for strategic planning, scientific, and administrative oversight of the Foundation for Sickle Cell Disease Research (FSCDR). She is a leading national and international researcher and population health scientist in the field of sickle cell disease, rare blood disorders, community-based participatory research, and chronic disease management. Dr. Bronté-Hall has extensive experience in developing programs that are closely aligned with the recruitment and retention of underserved and underrepresented populations for treatment of SCD, research and clinical trials. She is currently President and CEO of the Foundation for Sickle Cell Disease Research (FSCDR), and Chief Wellbeing Officer (CWO) of the Sickle Care and Research Network, FSCDR, LLC, an independent full-service outpatient medical treatment and clinical trials center that offers coordinated care for persons suffering from SCD. Dr. Bronté-Hall is an Associate Professor in the Department of Public Health Sciences, Department of Health Services Research and Policy at the University of Miami's Miller School of Medicine, where she has created a sickle cell disease research portfolio and an academic–community partnership to translate research into practice.

Sickle cell disease (SCD) is the most common genetic blood disorder in the world. Millions of people in the world have SCD and about 300,000 babies are born with it each year. Readers will learn about the major symptoms of SCD, including chronic anemia, delayed growth, spleen dysfunction, opportunistic infections, vision loss, leg ulcers, stroke, and heart problems. The book explains how the primary cause of SCD is a gene mutation that causes hemoglobin to polymerize in red blood cells, making them adopt an abnormal sickle shape. Sickled cells carry less oxygen and occlude blood vessels in tissues and organs throughout the body. The reader will learn how SCD is inherited and how genetic testing can provide information that prospective parents can use to make reproductive decisions. The book presents treatments for SCD such as pain medications, antibiotic therapy, blood transfusions, and bone marrow transplantation. Future prospects for diagnosing, treating, and curing SCD are evaluated, including maternal blood screening, preimplantation genetic diagnosis, gene therapy, and genome editing." Abstract source