Governor Brian P. Kemp Friday announced his appointments to the Georgia Rare Disease Advisory Council, created by House Bill 918. The Council is comprised of 16 qualified professionals, persons surviving with uncommon diseases, and caregivers appointed by the Governor, Lieutenant Governor, and Speaker of the House. It volition counsel the General Assembly and different authorities agencies and departments connected the needs of individuals with uncommon diseases surviving successful Georgia.
There are much than 7,000 known uncommon diseases affecting astir 25-30 cardinal Americans, much than fractional of whom are children. Those surviving with uncommon diseases look galore challenges, including delays successful obtaining an close diagnosis, uncovering a healthcare supplier with expertise successful their unsocial condition, and a deficiency of entree to therapies and medications utilized to dainty specified diseases.
Georgia Rare Disease Advisory Council
Beth Nguyen (Chairperson) is the laminitis of Rare STRIDES® and the Worldwide Syringomyelia & Chiari Task Force, and the Georgia National Organization for Rare Disorders Volunteer Ambassador. Nguyen is simply a registered caregiver with a divers inheritance successful captious care, transplants, and exigency country experience. She is astir passionate astir making uncommon diseases disposable successful the tract of healthcare and volunteers her clip advocating for children and adults with these conditions. For 3 consecutive years, Nguyen was nominated for Atlanta AJC Nurse of the Year for excellence successful bedside care. She developed the archetypal Multidisciplinary Rare Disease Model of Care and has authored galore published articles and a book. Nguyen co-led efforts to found the archetypal Code Rare® aesculapian acquisition programme for archetypal responders and aesculapian teams and initiated the archetypal Rare Wish® programme for children and adults impacted by uncommon diseases. As a uncommon illness diligent and aesculapian professional, Nguyen has utilized her firsthand acquisition to assistance thrust advancement successful each areas of attraction coordination and nonstop aesculapian attraction successful the tract of uncommon diseases. She is devoted to empowering aesculapian teams and patients with innovation that furthers diligent safety, prevents complications, advances attraction coordination, delivers prime services, streamlines models of care, and sets a caller modular for fantabulous aesculapian attraction crossed each disciplines for men, women, and children with uncommon 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 part of the Georgia Department of Community Health. He is besides an Adjunct Associate Professor successful the Department of Pediatrics astatine Morehouse School of Medicine. Holloway is simply a autochthonal Atlantan, completed his undergraduate enactment astatine Georgia Institute of Technology, received his aesculapian grade from Howard University College of Medicine, and obtained an M.B.A. from Kennesaw State University. He is simply a Board-Certified Pediatrician and Allergist. Holloway has served arsenic a subordinate of respective 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 respective awards and honors, was recognized arsenic 1 of America’s Leading Physicians by Black Enterprise Magazine in 2003 and 2008, and was featured in Atlanta Business Chronicle’s Who’s Who successful Atlanta Health Care. He besides 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 astir 900 patients with uncommon inborn metabolism conditions. Li is the Co-Chair of the Georgia Newborn Screening Advisory Committee (NBSAC) and is extensively progressive successful Georgia’s NBS caller development, implementation, and objective follow-up for children with metabolic disorders. As vice main of the genetics work astatine Children’s Healthcare of Atlanta (CHOA), she and her colleagues supply familial consultation to pediatric patients from immoderate and each parts of the state. Currently, she is the aesculapian manager of the Emory CRD (CTCF-related disorder) Center and the geneticist of the multidisciplinary Differences of Sex Development Clinic astatine CHOA, providing expertise connected molecular diagnosis to usher treatment. She is besides a cardinal subordinate of the National Organization for Rare Disorders information postulation and investigation moving group. Li has aggregate acquisition roles, including adjunct programme manager for the Medical Biochemical Genetics Fellowship program, Continuing Medical Education people manager for play genetics objective conferences, and bedside teacher for aesculapian students, residents, and genetics counseling students. Her probe is chiefly successful breathtaking objective trials for uncommon diseases, and she is the main researcher for aggregate Phase I/II and III objective 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, wherever helium assists successful overseeing 1 of the state’s largest agencies. Additionally, helium presently serves arsenic a Commissioner for the Brain and Spinal Injury Trust Fund. Krull was antecedently the Health Policy Counsel astatine the Georgia Department of Community Health, wherever helium focused overmuch of his enactment connected the healthcare waivers authorized by the Patients First Act. Before moving for the state, Krull was the Solicitor-General of Douglas County for implicit six years wherever helium was recognized arsenic the Mothers Against Drunk Driving Prosecutor of the Year for his enactment reducing DUIs successful Douglas County. He antecedently was the typical for the 13th District connected the State Board of Education. Krull is simply a postgraduate of Georgia State University with a B.A. successful Political Science and a J.D. from the Western Michigan University Thomas M. Cooley Law School. He and his woman Katherine person 2 daughters and unrecorded successful Sandy Springs.
Kojo Mensa-Wilmont (Representative from an world probe instauration that receives assistance backing for uncommon illness research) is Dean of the College of Science and Mathematics and a Molecular and Cell Biology prof astatine Kennesaw State University (KSU). Prior to becoming a Dean astatine KSU, Mensa-Wilmont was Head of the Department of Cellular Biology and a prof astatine the University of Georgia (UGA). He was awarded a National Role Model Award by Minority Access INC and is simply a Fellow of the African Academy of Sciences. He has contributed to implicit sixty scholarly, peer-reviewed journals and is the main researcher connected 2 ongoing national probe projects. At the University of Georgia, Mensa-Wilmont continues to service arsenic an adjunct professor, an advisor to the Minority Premedical Students Association and the Scholars for Diversity successful STEM, and an Academic Leader for the UGA Chemical Biology Group.
Tina Turner (Department of Public Health) is the Child Health Services Deputy Director wrong the Maternal and Child Health Division of the Georgia Department of Public Health. In this role, she is liable 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 implicit 20 years of nationalist wellness experience, including but not constricted to serving arsenic the Maternal and Child Health Program Manager for the Ohio Department of Health. Turner has besides implemented assorted prime betterment initiatives with hospitals, managed agrarian wellness initiatives, and implemented corporate interaction approaches.
English (US)