|Atlanta, GA – Governor Brian P. Kemp today announced his appointments to the Georgia Rare Disease Advisory Council, created by House Bill 918. The Council is comprised of 16 qualified professionals, persons living with rare diseases, and caregivers appointed by the Governor, Lieutenant Governor, and Speaker of the House. It will advise the General Assembly and other state agencies and departments on the needs of individuals with rare diseases living in Georgia.There are more than 7,000 known rare diseases affecting approximately 25-30 million Americans, more than half of whom are children. Those living with rare diseases face many challenges, including delays in obtaining an accurate diagnosis, finding a healthcare provider with expertise in their unique condition, and a lack of access to therapies and medications used to treat such diseases.|
|Georgia Rare Disease Advisory Council|
Beth Nguyen (Chairperson) is the founder of Rare STRIDES® and the Worldwide Syringomyelia & Chiari Task Force, and the Georgia National Organization for Rare Disorders Volunteer Ambassador. Nguyen is a registered nurse with a diverse background in critical care, transplants, and emergency room experience. She is most passionate about making rare diseases visible in the field of healthcare and volunteers her time advocating for children and adults with these conditions. For three consecutive years, Nguyen was nominated for Atlanta AJC Nurse of the Year for excellence in bedside care. She developed the first Multidisciplinary Rare Disease Model of Care and has authored numerous published articles and a book. Nguyen co-led efforts to establish the first Code Rare® medical education program for first responders and medical teams and initiated the first Rare Wish® program for children and adults impacted by rare diseases. As a rare disease patient and medical professional, Nguyen has used her firsthand experience to help drive progress in all areas of care coordination and direct medical care in the field of rare diseases. She is devoted to empowering medical teams and patients with innovation that furthers patient safety, prevents complications, advances care coordination, delivers quality services, streamlines models of care, and sets a new standard for excellent medical care across all disciplines for men, women, and children with rare diseases.
Kelvin J. Holloway (Division of Medical Assistance Plans of the Department of Community Health) is Deputy Executive Director and Senior Medical Director for the Medical Assistant Plans division of the Georgia Department of Community Health. He is also an Adjunct Associate Professor in the Department of Pediatrics at Morehouse School of Medicine. Holloway is a native Atlantan, completed his undergraduate work at Georgia Institute of Technology, received his medical degree from Howard University College of Medicine, and obtained an M.B.A. from Kennesaw State University. He is a Board-Certified Pediatrician and Allergist. Holloway has served as a member of several boards, including the American Lung Association, the National Center for Healthy Housing, Howard University Medical Alumni Association, and the Atlanta Children’s Shelter. He is the recipient of several awards and honors, was recognized as one of America’s Leading Physicians by Black Enterprise Magazine in 2003 and 2008, and was featured in Atlanta Business Chronicle’s Who’s Who in Atlanta Health Care. He also received the National Medical Association’s Floyd J. Malveaux, M.D. award, was inducted into the Alpha Omega Alpha Medical Honor Society, and received the Project Catalyst Service Award from the City of Atlanta.
Hong Li (Geneticist) oversees the Emory Metabolic Clinic, which cares for nearly 900 patients with rare inborn metabolism conditions. Li is the Co-Chair of the Georgia Newborn Screening Advisory Committee (NBSAC) and is extensively involved in Georgia’s NBS new development, implementation, and clinical follow-up for children with metabolic disorders. As vice chief of the genetics service at Children’s Healthcare of Atlanta (CHOA), she and her colleagues provide genetic consultation to pediatric patients from any and all parts of the state. Currently, she is the medical director of the Emory CRD (CTCF-related disorder) Center and the geneticist of the multidisciplinary Differences of Sex Development Clinic at CHOA, providing expertise on molecular diagnosis to guide treatment. She is also a key member of the National Organization for Rare Disorders data collection and analysis working group. Li has multiple educational roles, including assistant program director for the Medical Biochemical Genetics Fellowship program, Continuing Medical Education course director for weekly genetics clinical conferences, and bedside teacher for medical students, residents, and genetics counseling students. Her research is primarily in exciting clinical trials for rare diseases, and she is the principal investigator for multiple Phase I/II and III clinical trials.
Matthew Krull (Division of Family and Children Services State Office) is the Deputy Chief of Staff and Interim General Counsel for the Georgia Department of Human Services, where he assists in overseeing one of the state’s largest agencies. Additionally, he currently serves as a Commissioner for the Brain and Spinal Injury Trust Fund. Krull was previously the Health Policy Counsel at the Georgia Department of Community Health, where he focused much of his work on the healthcare waivers authorized by the Patients First Act. Before working for the state, Krull was the Solicitor-General of Douglas County for over six years where he was recognized as the Mothers Against Drunk Driving Prosecutor of the Year for his work reducing DUIs in Douglas County. He previously was the representative for the 13th District on the State Board of Education. Krull is a graduate of Georgia State University with a B.A. in Political Science and a J.D. from the Western Michigan University Thomas M. Cooley Law School. He and his wife Katherine have two daughters and live in Sandy Springs.
Kojo Mensa-Wilmont (Representative from an academic research institution that receives grant funding for rare disease research) is Dean of the College of Science and Mathematics and a Molecular and Cell Biology professor at Kennesaw State University (KSU). Prior to becoming a Dean at KSU, Mensa-Wilmont was Head of the Department of Cellular Biology and a professor at the University of Georgia (UGA). He was awarded a National Role Model Award by Minority Access INC and is a Fellow of the African Academy of Sciences. He has contributed to over sixty scholarly, peer-reviewed journals and is the principal investigator on two ongoing federal research projects. At the University of Georgia, Mensa-Wilmont continues to serve as an adjunct professor, an advisor to the Minority Premedical Students Association and the Scholars for Diversity in STEM, and an Academic Leader for the UGA Chemical Biology Group.
Tina Turner (Department of Public Health) is the Child Health Services Deputy Director within the Maternal and Child Health Division of the Georgia Department of Public Health. In this role, she is responsible for the Child Health Services Unit’s programs Children First; 1st Care; Help Me Grow; Newborn Screening; and Early, Hearing, Detection, and Intervention. She has over 20 years of public health experience, including but not limited to serving as the Maternal and Child Health Program Manager for the Ohio Department of Health. Turner has also implemented various quality improvement initiatives with hospitals, managed rural health initiatives, and implemented collective impact approaches.