About the Council

Patrick Flume, MD | Council Chair

Dr. Flume is a Distinguished Professor of Medicine and Pediatrics at MUSC and the Powers-Huggins Endowed Chair for Cystic Fibrosis. He received his medical degree from the University of Texas Health Science Center at San Antonio. He completed his internal medicine residency at the University of Texas Health Science Center and his fellowship in pulmonary and critical care medicine at the University of North Carolina, Chapel Hill. Dr. Flume joined the faculty of the Division of Pulmonary and Critical Care Medicine at MUSC in 1993. His clinical and research interests are in CF, bronchiectasis, mycobacterial infections. He serves as the Director of the MUSC Cystic Fibrosis Center and Therapeutic Development Network (TDN) Research Site. He also serves as the co-Principal Investigator for the South Carolina Clinical & Translational Research Institute (SCTR) and as the Associate Vice President for Clinical Research. He has been internationally recognized for his work in the cystic fibrosis community, serving as Editor-in-Chief for the Journal of Cystic Fibrosis, and he received the prestigious 2024 Impact Award from the Cystic Fibrosis Foundation.

 

Virginie Daguise, MSPH, PhD | Department of Health and Environmental Control

Dr. Daguise is the Director of the Bureau of Chronic Disease and Injury Prevention in the South Carolina Department of Health and Environmental Control. She serves as the state’s Chronic Disease Director. She received her PhD in Epidemiology at the Arnold School of Public Health at the University of South Carolina in 2001. She is an adjunct professor at the USC Arnold School of Public Health. She has served on several boards to promote community health and prevention policies and is a reviewer for several journals. In addition to serving on SCRDAC, she also serves on the USC Arnold School of Public Health Public Health Practice Advisory Council, the Clinical Trials Network Policy Advisory Board and ASTHO'S policy committee.

 

Kevin Wessinger, MD | Department of Health and Human Services

Dr. Wessinger is the Chief Medical Officer of South Carolina Department of Health and Human Services. He received his medical degree from MUSC in 1986 before completing his residency at the University of Alabama at Birmingham Children's Hospital in 1989. From 1989-2022, he was a general pediatrician in private practice , and served as Chief of Pediatrics at the Palmetto Richland Memorial Hospital from 2001-2002. From 2011-2022, he presided over Sandhills Pediatrics as President, and from 2015-2022, he also held the position of President and CEO of South Carolina Pediatric Alliance. He served as President of the South Carolina Chapter of the American Academy of Pediatrics from 2016-2018. For over a decade, he has presented and spoken about quality improvement processes for pediatric care at various state and national conferences.

 

Daniel Judge, MD | Medical University of South Carolina

Dr. Judge is a professor of Medicine and Cardiology at MUSC and serves as the Director of Cardiovascular Genetics and Fellowship Director of Cardiovascular Disease. He received his medical degree from the University of Pennsylvania at Philadelphia in 1993 before completing his residency and fellowship in cardiology at Johns Hopkins University at Baltimore, concurrently with a post-doctoral fellowship in research and clinical training at the McKusick-Nathans Institute of Genetic Medicine, in 2000. His clinical activities focus on inherited forms of cardiovascular disease and Advanced Heart Failure/Transplant Cardiology. He established the JHU Center for Inherited Heart Disease in 2002. He moved to MUSC in September 2017, where he started and now leads a Cardiovascular Genetics clinical program. Additionally, he is a member of the Advanced Heart Failure/Transplant Cardiology section at MUSC, where he cares for people with heart failure, left ventricular assist devices, and cardiac transplantation. His research focus is on monogenic inherited cardiovascular disorders, spanning the spectrum of both basic investigations and clinical trials. He remains an Adjunct Faculty member at Johns Hopkins. He leads a large population genomic screening program that seeks to enroll 100,000 participants to undergo whole exome DNA sequencing.

 

Divya Ahuja | University of South Carolina School of Medicine

Divya Ahuja, MD, joined the Division of Infectious Diseases in 2005, where he is currently Associate Professor of Clinical Internal Medicine. Dr. Ahuja graduated medical school in New Delhi, India in 1992, and completed parts of his residency in India, the United Kingdom and then at York Hospital in Pennsylvania. Dr. Ahuja also trained in a fellowship in Genitourinary Medicine and HIV at the Bristol Royal Infirmary and Plymouth Hospital in the United Kingdom and then completed a fellowship in Infectious Disease at Penn State University College of Medicine in 2005. He is the Principal Investigator for the SC HIV/HCV Clinical Training Center and the South East HCV Telehealth Initiative, as well as the Medical Director of the Immunology Center.

 

Kate Wink | South Carolina Hospital Association

Kate Wink is the Governmental and Regulatory Affairs Financial Liaison for Santee Cooper, South Carolina's state-owned electric and water utility. She received a Bachelor of Science and a Masters in Public Administration from the University of South Carolina. Kate has over 20 years experience working in State Government, with more than ten years spent working in the South Carolina Legislative arena with the Senate Finance Committee. The Rare Disease Advisory Council is very important to Kate, as she was born with a rare disease- Hereditary Angioedema (HAE). She has first-hand experience navigating the health care and insurance systems through the lens of a rare disease. She is active in the national HAE patients group, the Hereditary Angioedema Association (HAEA), where she has had the opportunity to participate in genetic studies, conferences, and lobbying efforts for rare disease funding in our Nation's Capital. Kate is not only a patient living with a rare disease, but also a caregiver. Her 12-year old son also has HAE. Kate and her husband are focused on ensuring he has a healthy, normal childhood, while teaching him the importance of advocating for his healthcare needs.

 

Vicki Young | South Carolina Primary Healthcare Association

Vicki Young is the Interim Chief Executive Officer/Chief Operating Officer of Operations with the South Carolina Primary Health Care Association. She previously served as department head for clinical quality improvement, working with federally qualified health centers across South Carolina. Her prior work experience includes Consultant for the Institute for Partnerships to Eliminate Health Disparities and positions with the Baptist Educational and Missionary Convention of South Carolina, Columbia Urban League, Applied Health Outcomes and National Direct Diabetic Supply Company. Vicki is active in the Columbia Urban League, NAACP, and Delta Sigma Theta Sorority - Columbia Alumnae Chapter. She also is a member of the Advisory Committee of the South Carolina Department of Health and Environmental Control. Vicki earned her PhD in pharmaceutical sciences and BS in pharmacy from the University of South Carolina and her BS in mathematics cum laude from Wofford College. She completed additional MD studies for at the University of South Carolina School of Medicine and lives in Columbia. She is a Fellow of the eighth class of the Liberty Fellowship Program and a member of the Aspen Global Leadership Network.

 

Jonathan Hawayek | Biopharma Industry

Jon Hawayek is a seasoned leader in government affairs, currently serving as the Head of State Government Affairs for Spark Therapeutics. With a distinguished career spanning multiple high-profile organizations, Jon brings extensive expertise in navigating regulatory landscapes and advocating for healthcare policies that impact patient access and innovation. Before joining Spark Therapeutics, Jon held influential government affairs roles at Zoll Medical and Allergan, where he played a pivotal role in shaping legislative and regulatory strategies at both state and federal levels. His strategic insights and advocacy efforts have contributed significantly to advancing healthcare initiatives and enhancing patient care across diverse markets. Jon earned his Bachelor of Science degree in Business Management from the State University of New York at Geneseo, complementing his academic foundation with a Master of Business Administration from Clarkson University. His educational background underscores his commitment to combining business acumen with a deep understanding of regulatory environments in the healthcare sector. In addition to his corporate responsibilities, Jon is actively involved in advocacy and community service. He serves on South Carolina’s Rare Disease Advisory Council (RDAC) and holds appointments as a member of RDACs in New York, Pennsylvania, New Jersey, Delaware, and Florida. These roles reflect his dedication to improving healthcare outcomes and supporting individuals affected by rare diseases through policy development and collaboration. Jon is passionate about driving meaningful change in healthcare policy and continues to leverage his expertise to advocate for patient-centered solutions that address critical healthcare challenges.

 

Neena Champaigne | Research and Treatment of Rare Diseases

Neena L. Champaigne, MD, is a clinical geneticist employed by the Medical University of South Carolina (MUSC) involved in the evaluation and treatment of patients with a variety of genetic conditions with a specialty in metabolic disorders. Dr. Champaigne provides clinical evaluation, care and counseling for metabolic patients across the Upstate, with clinics in both Greenville and Greenwood. She also provides short- and long-term follow-up for the South Carolina Newborn Screening Program. Dr. Champaigne is certified by the American Board of Medical Genetics in Clinical Genetics (2007) and Medical Biochemical Genetics (2009), as well as the American Board of Pediatrics (2002). She holds memberships in the Society for Inherited Metabolic Disorders, American Society of Human Genetics, American Medical Association, and the South Carolina Medical Association.

 

Maysen Mesaros | Research and Treatment of Rare Diseases

Maysen Mesaros, MS, CGC, is the genetic counselor for the MUSC Department of Neurology. She earned her Master of Science degree in Genetic Counseling from The Ohio State University, where she also obtained her Bachelor of Science degree in Molecular Genetics. Maysen specializes in identifying and helping patients understand the health and familial implications of genetic neuromuscular, movement and epileptic disorders.

 

 

 

Russell Norris, PhD | Research and Treatment of Rare Diseases

Dr. Norris is a professor in Regenerative Medicine and Cell Biology at MUSC and holds clinical appointments in Neurosurgery and Medicine/Cardiology. Graduating from MUSC in 2000 with a PhD in biomedical sciences, he focused on genetics and molecular biology. After two postdoctoral fellowships at MUSC, he opened his lab in 2007. Over the past 15 years, Dr. Norris rapidly advanced to a tenured professor in Regenerative Medicine and Cell Biology. His lab's work in genetics and connective tissue disease, featured in top journals like Science, Circulation, Nature Genetics, and Nature, gained global recognition. He's authored over 100 scientific articles and delivered more than 200 talks worldwide, emphasizing student training with over 100 mentored students. Notably, through the incorporation of patients into his lab as “patient-scientists” they have identified a key gene for hypermobile Ehlers-Danlos syndrome (hEDS). With a vast clinical registry and the first hEDS animal model, they aim to translate genetic findings into diagnostic tools and treatments for hEDS patients.

 

Tripp Jennings, MD | State Health Plan

Dr. Jennings is serving as the Clinical Innovation Officer for Blue Cross Blue Shield of South Carolina. He previously served as the Chief Value and Informatics Officer for Palmetto Health Hospital System and System Vice President for Informatics prior to this position. His areas of focus have included Value Based Healthcare, Emergency Medicine, Population Health, Telehealth, Business Intelligence, Clinical Utilization, Consumerism, and Informatics. He also served as a Medical Director for the South Carolina Department of Health and Human Services and as the Chief Medical Informatics Officer for the Palmetto Health Quality Collaborative. He is an Assistant Clinical Professor at the University of South Carolina School of Medicine and is a practicing Attending Physician at Palmetto Health Richland Department of Emergency Medicine. Dr. Jennings earned his undergraduate degree from the College of Charleston and his MD from the University of South Carolina School of Medicine. He is a Fellow of the American College of Emergency Medicine. He has previously served as President of the South Carolina College of Emergency Physicians. Dr. Jennings has earned numerous awards, honors, and grants during his career. He was named the Distinguished Young Alumni of the Year for the University of South Carolina and South Carolina Emergency Medicine Physician of the Year. He has presented to the United States Congress on health IT topics. In addition to being featured by the Wall Street Journal, US News and World Report, Bloomberg Businessweek, and Health Leaders Media, he has been the keynote speaker at many conferences, symposiums, and meetings, as well as various panel discussions regarding health care, informatics, and population health.

Rare Disease Organization

 

Jason Smith | Caregiver of Person with Rare Disease

 

Anthony Hamilton | Patient

 

Karen Kemper, PhD | Patient

Dr. Kemper, MSPH, PhD, is an Associate Professor Emerita in the Department of Public Health Sciences at Clemson University. She obtained her PhD in Health Promotion and Education with an emphasis on Nutrition and Obesity at the University of South Carolina Arnold School of Public Health in 1992. She holds certifications as a Health Fitness Instructor and in Fitness in Aging Populations. She has membership in several professional organizations related to public health and receives continual training in physical activity workshops and programs. In addition to her contributions to multiple research projects and grants as well as professional publications in public health, Dr. Kemper has received many awards honoring her leadership and mentorship in university programs and health associations. She has served on various departmental, university, state, regional, and national committees, in particular the Clemson University Faculty Senate, SCDHEC Cardiovascular Health Strategic Planning Committee, SC Coalition to Promote Physical Activity, and American Public Health Association Health Communications Steering Committee. As a patient of with Scleroderma since 1992, she served as Vice-President of the SC Chapter of the National Scleroderma Foundation from 2010-2022 and currently serves on the NSF Southeast Chapter Advisory Committee.