The Symposium

FOUNDATION FOR SICKLE CELL DISEASE RESEARCH’S

14TH ANNUAL SICKLE CELL DISEASE RESEARCH & EDUCATIONAL SYMPOSIUM & 43rd NATIONAL SICKLE CELL DISEASE SCIENTIFIC MEETING

In a drive to find innovative solutions and instill a collaborative approach to understanding Sickle Cell Disease, FSCDR holds its Annual Sickle Cell Disease Research and Educational Symposium. For 13 years now, with participation from the world’s leading physicians, scientists, public health professionals, researchers, patients, and caregivers, the Symposium has proven itself an essential platform for the evolution of SCD treatment. A multifaceted approach to finding a dependable cure is paramount, as it stimulates new therapies while informing international members of the latest findings.

Engagement from the world’s leading pharmaceutical and medical research companies, including, but not limited to, Global Blood Therapeutics, Novartis, Pfizer, Medunik, and Bioverativ, shows a desire for interactive education, sharing of best practices, and exploring novel approaches to dealing with this age-old disease that goes beyond theory to develop practical, real-life solutions.

SPEAKERS + LEADERS

Wally R. Smith, MD is the first recipient of The Florence Neal Cooper Smith Professor of Sickle Cell Disease, the second African-American female chair in the United States. He also serves as the Vice-Chairman for Research of the Division of General Internal Medicine and is the former Scientific Director of the Center on Health Disparities at Virginia Commonwealth University. In addition he was a member of the Institute of Medicine’s Committee on Standards for Trustworthy Guidelines. He has authored over 100 publications, and served as an investigator on over 50 externally funded grants and contracts, including principal investigator on 26 federal or foundation-funded grants and contracts

WALLY R. SMITH, MD 2020 Symposium Scientific Chair and Chair of the End Organ Damage Educational Session

Yolanda Cash Jackson is an experienced Government Law attorney who has established a strong reputation in the community for her leadership and commitment to civic, charitable, and professional organizations. She concentrates her practice in the area of Governmental Relations and has developed a proficiency in State government funding and appropriations. Ms. Jackson has excellent working relationships with the State’s leading elected officials and policymakers.

Ms. Jackson has successfully lobbied State funding for a number of private Historically Black Colleges and Universities (HBCUs) and School Boards. Most noteworthy is Ms. Jackson’s successful lobbying of State funding for Florida’s three private HBCUs, totaling nearly $15 million. Ms. Jackson’s diverse list of clients include Fortune 100 companies, gaming, and healthcare corporations. She has also successfully lobbied for appropriations on transportation related infrastructure matters.

Throughout her career, Ms. Jackson has lobbied and shepherded landmark legislation. Most recently, during the 2017 Legislative Session Ms. Jackson successfully lobbied for the inclusion of The Black Farmers and Agriculturists Association (BFAA) in the State’s recent medical marijuana law, which granted a designated license to the BFAA. This is noteworthy because it is believed to be the first of its kind in the Nation.

YOLANDA CASH JACKSON, ESQ. 2020 Access to Care Keynote Speaker

Payal C. Desai, MD¬¬ is an Associate Professor of Internal Medicine, Division of Hematology, at the Ohio State University, Arthur G. James Cancer Hospital, Wexner Medical Center, where she is Director of Sickle Cell Research.

Dr. Desai received her medical degree from the University of Louisville School of Medicine, Louisville, KY. She completed her residency at University of Louisville in Louisville, KY and her fellowship in hematology and oncology at University of North Carolina at Chapel Hill, Chapel Hill, NC. During her fellowship, she pursued disease specific training in sickle cell disease on a T32 training award. She is board certified in Internal Medicine and Hematology.

Dr. Desai has authored or co-authored 26 papers and 32 abstracts, primarily in the field of sickle cell research. Dr. Desai is a 2008 Annual Resident Teacher Award Winner, the 2011 American Society of Hematology Abstract Achievement Award Winner, the 2015 Dr. Richard and Lynda Goldberg Award for Clinical Excellence Winner, the 2016 Fellowship Benign Hematology Lecture Award and the 2016, 2017 and 2018 Awardee for the Faith Thomas Foundation Partnership Award for Sickle Cell Awareness. Under her leadership, the Ohio State Comprehensive Adult Sickle Cell Program is the only joint commission certified program in the country.

Dr. Desai holds professional memberships with the American Society of Hematology and the Sickle Cell Adult Provider Network (SCAPN). She is currently vice president of the Sickle Cell Adult Provider Network. and founder of the Sickle Cell Provider Network, Jr, an organization committed to the development of young researchers in the field of sickle cell disease. She has participated in numerous multicentered studies and currently the principal investigator on over 10 studies focused on sickle cell disease.

PAYAL C. DESAI, MD 2020 Symposium Planning Committee Member, Chair of the Endocrine Dysfunction Plenary Session

Beverley Francis-Gibson is President/CEO of the Sickle Cell Disease Association of America, Inc. (SCDAA). Francis-Gibson previously served as the Executive Director of the National Alliance on Mental Illness (NAMI HC) of Howard County in Columbia, Maryland and has more than 25 years of experience serving non-profits and community foundations. She is Immediate Past Chair of the Board of Directors of Maryland Nonprofits. She is a 2009 Leadership Premiere Graduate and previous Board member of Leadership Howard County. Francis-Gibson is currently a Board Member of the Global Patient Advocacy Advisory Board on Sickle Cell Disease; a member of the Sickle Cell Disease Coalition and the Sickle Cell Steering Committee. She also serves on the National Minority Quality Forum’s Sickle Cell Disease Working Group, the SCD Patient Survey Steering Committee, Sanofi Advisory Council, the Emergency Department Sickle Cell Care Coalition and is a proud member of Delta Sigma Theta Sorority, Inc.

Francis-Gibson is the creator and co-facilitator of “Leadership Conversations” a quarterly gathering of nonprofit Executive Directors who share best practices, network and hear from engaging speakers on various topics. Currently, she mentors Executive Directors through her affiliation with the Association of Community Services.

She has been a dynamic instructor on fundraising, grant writing and philanthropy at Duke University’s Nonprofit Management Program and at the University of Chapel Hill in Durham and Chapel Hill, North Carolina, respectively. She has been a popular speaker and webinar presenter at the Maryland Governor’s Conference on Grant Making for several years.

Francis-Gibson brings her extensive nonprofit experience to SCDAA in the areas of management, grants, philanthropy, public speaking, fundraising/special events, advocacy and board development.
Additionally, she brings her specialized expertise and exceptional professionalism to SCDAA and is excited to be joining the sickle cell family to help raise awareness of the disease across the country.

A native of St. Thomas, US Virgin Islands, Francis-Gibson holds a B.A. in Public Relations and Communications and an M.A. in Industrial and Community Counseling from Eastern Kentucky University, Richmond Kentucky.

BEVERLEY FRANCIS-GIBSON, MA Chair of the Patient Access to Care Session

Dr. Gupta, is a professor of Medicine in the Division Hematology, Oncology, and Transplantation. Dr. Gupta’s main research interests include pain and vascular biology as well as molecular mechanisms underlying the tumor microenvironment and pain. Her work is focused on the mechanisms of pain and pain therapy with opioids, cannabinoids, and evolving novel therapies.

KALPNA GUPTA, PhD Chair of the Pain and Palliative Care through Cannabis Educational Session

Dr. Andrew Campbell’s distinguished training and career path began at Morehouse College. He continued medical school at Case Western Reserve University and completed post graduate training at Massachusetts General Hospital (Harvard) and Lurie Children’s Hospital (Northwestern University). Prior to joining Children’s National, Dr. Campbell was Director of the Comprehensive Sickle Cell Center at the University of Michigan, a position he held since 2005. His research interests span several topics in sickle cell disease including pulmonary complications, fetal hemoglobin switching in transgenic sickle cell mice, phenotype/genotype relationships and renal complications.

ANDREW CAMPBELL, MD Chair of the Men's Patient Symposium and Chair of The Global Sickle Cell Disease Symposium

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 Sickle Cell Disease and Breast Cancer, research and clinical trials. She is currently President and CEO of the Foundation for Sickle Cell Disease Research (FSCDR), Chief Health Officer (CHO) of the Sickle Care and Research Network, FSCDR, LLC, an independent full- service outpatient medical treatment and clinical trials center that offers medical care and coordinated care for underserved populations. Dr. Bronté-Hall has a faculty appointment at the University of Miami, Miller School of Medicine as an Associate Professor in the Department of Public Health Sciences, Department of Health Services Research and Policy.

LANETTA BRONTÉ-HALL, MD, MPH, MSPH President of the Foundation for Sickle Cell Disease Research and Chair of the Inaugural Women's Patient Symposium

Shelley Ann Anderson is an individual living with Sickle Cell Disease. She is also a Board Member of the Foundation for Sickle Cell Disease Research

SHELLEY ANN ANDERSON Co-Chair of the Inaugural Women's Patient Symposium

Dr. Minniti is Professor of Clinical Medicine and Pediatrics at Einstein College of Medicine. She is the Director of the Sickle Cell Center for Adults at Montefiore Hospital, whose mission is to provide exceptional, seamless, comprehensive, compassionate and individualized care, education, counseling and research for people living with sickle cell disease. Dr. Minniti is a clinical trial specialist and a translational researcher who believes that the best way to provide care for SCD patients is on a continuum, from birth to adulthood.

The focus of her research is in understanding mechanisms that lead to end organ damage in order to identify early biomarkers and targeted therapies. Her interests have spanned from stroke to pulmonary hypertension and most recently, she has focused on leg ulcers as they represent a window into the vasculopathy in SCD. She aims to develop pathogenetically based therapeutic approaches for preventing and treating SCD-related end organ damage.

CATERINA P. MINNITI, MD - Honorable Mention, 2019 SCIENTIFIC CHAIR

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 Ohio State University.  Mr. Bonham was a fellow in the American Association of Medical Colleges Health Services Research Fellowship Program. Mr. Bonham was a tenured faculty member at Michigan State University with appointments in the Colleges of Medicine and Law. He is currently 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 Unit, which investigates the equitable integration of new genomic knowledge and precision medicine into clinical settings.

His research focuses primarily on the social implications 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 exacerbating or ameliorating health inequities. The Bonham group also studies sickle cell disease, a condition that will be impacted by emerging curative genomic technologies, but has faced significant health disparities both in the United States and globally.

Mr. Bonham also serves as the senior advisor to the NHGRI Director on Genomics and Health Disparities. This role complements his research, as it allows contemporary genomic science and policy issues to inform his research program.

Scientific Summary

Within the Social and Behavioral Research Branch, Mr. Bonham directs the Health Disparities Unit.  The mission of the HDU is to investigate approaches to translating new genomic knowledge and precision medicine into clinical settings without exacerbating health inequities.

The Bonham group is one of a small number of research teams working to bring empirical evidence to questions regarding the role of genomics in reducing or exacerbating health disparities. His research program utilizes a variety of methods and data types including qualitative interviews, quantitative survey methods, and biological data including genomic, microbiome, and clinical data.

Mr. Bonham and colleagues have developed the first scale to assess health professionals’ use of race and genetics in clinical practice, called the Bonham and Sellers Race Attributes in Clinical Evaluation (RACE) scale. Additionally, he created an index designed to measure health professionals’ knowledge of human genetic variation and their beliefs and attitudes about its relationship to race. This body of work informs a conceptual model of the influence of race in the clinical encounter, which views the clinician-patient relationship as bi-directional. The model incorporates healthcare providers’ knowledge, attitudes, and beliefs about human genetic variation.

Currently, the Bonham group is exploring how participation in genomics research impacts underrepresented and under-resourced populations by investigating how genomic research results are returned to participants from these populations. With this information, the Bonham group is developing policy guidelines to return genomic findings to under-resourced participants. These guidelines will aid investigators in developing programs and policies for working with under-resourced groups and help prevent health inequities due to genomics research.

The Bonham group also studies sickle cell trait and sickle cell disease, a condition with applications for emerging genomic technologies and a significant health disparity impact both in the United States and globally. In 2014, Mr. Bonham established the Insights into the Microbiome and Environmental Contributions to Sickle Cell Disease and Leg Ulcers Study (INSIGHTS), conducted at the NIH Clinical Center and Montefiore Medical Center. The central goal of this study is to examine the microbial, genomic, psychosocial, and environmental contributors to leg ulcers in sickle cell disease, and more broadly to evaluate variation in phenotype in the disease. To achieve its goals, the study characterizes the skin microbiome of sickle cell disease patients, collects genomic and clinical data, and uses social science methods to assess the social environment and psychosocial status (e.g., stress, discrimination, stigma and depression) of individuals with and without leg ulcers. INSIGHTS is highly interdisciplinary and incorporates national and international expertise from health services research, microbiology, genomics, hematology, psychology and sociology.

Sickle cell disease will be one of the first conditions to be impacted by recent advances in gene editing. As a result, the Bonham group investigates the perspectives of the sickle cell disease community on somatic genome editing. This work will inform the development and clinical applications of emerging curative genetic therapies for sickle cell disease.

VENCE L. BONHAM, Jr., JD Keynote Speaker for the 14th Annual Sickle Cell Disease Research and Educational Symposium

HOTEL LOCATION

FORT LAUDERDALE MARRIOTT HARBOR BEACH RESORT & SPA

3030 Holiday Drive, Fort Lauderdale, FL 33316

The hotel block will close on May 20th, 2020

The first 50 Symposium AND Hotel registrants are entered into a raffle for a chance to win a complimentary 2 night stay at the host hotel in Fort Lauderdale, FL.*

*Not to be used during the Symposium June 12 – 14, 2020 weekend. Booking link is emailed after Symposium Registration.
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