The Symposium

FOUNDATION FOR SICKLE CELL DISEASE RESEARCH’S

INAUGURAL PRE-SYMPOSIUM WEBINAR: COVID-19 AND SICKLE CELL DISEASE AND ACCESS TO CARE

In an drive to offer content that is reflective of the current state of public health, FSCDR is hosting a webinar focusing on the impact of the COVID-19 pandemic on individuals with sickle cell disease, including Access to Care.

Here is the schedule:

June 11, 2020:
This is a half-day (1pm – 4:30pm) focusing on Access to Care in Sickle Cell Disease. As announced earlier in the year, we acquired the Access to Care Summit, formerly hosted by Global Blood Therapeutics, Inc. The purpose of this webinar is focusing on innovations and adaptations to SCD care during the COVID-19 pandemic, as well as receiving updates on last year’s ACCEL Program Awardees.

June 12, 2020:
This is a full day (8am – 5pm) focusing on the impact of COVID-19 on individuals with Sickle Cell Disease. This day’s purpose is to explore: how to treat and care for individuals with sickle cell disease during a pandemic; analyzing COVID-19 in minority communities, where sickle cell disease and sickle cell trait is more prevalent; how patients are doing in hot-spot states of Florida, New York, California and Louisiana, among others; how patients are doing in countries such as Ghana, Italy, France, Tanzania and England. Additionally, we are having patients participate and speak about their COVID-19 experience, including how they are handling their pain, the emergency room, and social isolation. The latter part of the day is focusing on: the Management of Pulmonary COVID-19 and SCD; how COVID-19 affects available blood supply for transfusions; and SCDAA MARAC Recommendations on COVID-19.

Due to the unprecedented Novel Coronavirus COVID-19, our annual in-person Symposium is rescheduled to September 23 – 25, 2020

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

Biree Andemariam is a hematologist and founding director of the New England Sickle Cell Institute (NESCI) at UCONN Health. NESCI serves over 300 adults with SCD. With a staff of 12 individuals, including nurses, social workers, patient navigators, and research assistants, NESCI provides comprehensive care, acute pain management, apheresis, clinical trials, and a transition destination for children. Dr. Andemariam’s primary research focuses on novel therapeutics and new pathways of care. She holds an undergraduate degree in molecular biology from Princeton University and a medical degree from Tufts and is Chief Medical Officer of the Sickle Cell Disease Association of America.

BIREE ANDEMARIUM, MD Chair of the COVID Management- Consensus Best Practices and Controversies Session

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, Speaker of the Report on ASH Sickle Cell Centers Training Conference

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 United States Epidemiology and Impact and European and African Epidemiology and Impact Sessions

Dr. Kenneth Bridges received the MD degree and hematology training at Harvard Medical School. He established the Joint Center for Sickle Cell and Thalassemic Disorders at Brigham and Women’s Hospital and Massachusetts General Hospital, which conducted bench-to-patient translational research in addition to providing comprehensive patient care. Dr. Bridges published over 70 peer-reviewed articles during his academic career, as well as number book chapters. He moved from academia to biotech pharma eventually joining Global Blood Therapeutics in the role of Vice President, Medical Affairs working on the new treatment for sickle cell disease, Oxbryta (voxelotor)

KENNETH BRIDGES, MD Speaker of the ACCEL Program Awardees Presentations

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 Speaker of the Community Care Adaptations 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 Speaker for the Transfusion and Blood Supply in SCD and COVID Session

Julie Panepinto is a Professor of Pediatric Hematology at the Medical College of Wisconsin/Children’s Hospital of Wisconsin. Dr. Panepinto is a clinical investigator who has focused her academic career on understanding and improving the health outcomes of patients and families with sickle cell disease. Her research focuses on integrating the perspective of the patient and family in the care of children with sickle cell disease through the use of patient-reported outcomes (PROs) and using big data to understand systems of care and health outcomes at the population level. 

JULIE A. PANEPINTO, MD, MSPH Chair of the COVID SCD Research

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

Dr. Zaidi is a classical hematologist who cares for chronic and acquired hemolytic anemias, and hemoglobinopathies, primarily, sickle cell disease (SCD). His research interests are focused on the intersection of technology and disease, as well as on healthcare outcomes and novel biomarker development.  He is also a tireless advocate for sickle cell disease and firmly believes that advocacy and patient education can be achieved using social media as a tool to interact with patients and physicians.

AHMAR U. ZAIDI, MD, Speaker of the Innovations and Adaptations to SCD care during COVID Session

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