In November 2013 Fragile X researchers led by MIND Institute Medical Director Randi Hagerman visited the Valle del Cauca District and the small town of Ricaurte, Colombia, which for years has been known to have a very high prevalence of individuals with intellectual disability and more recently this was found to be Fragile X syndrome. The NFXF was along on this journey of discovery.
Upon determining the high incidence of Fragile X-associated Disorders in and around Ricaurte, the MIND Institute investigators determined that researching this Fragile X hotspot could determine the founder effect which apparently dates back centuries to the Conquistadores coming to Ricaurte. There were socioeconomic factors that kept the affected people in Ricaurte and surrounding sites, but there are other locations around the world that have pockets of a high prevalence of Fragile X syndrome. They want to bring new treatments for Fragile X syndrome and associated disorders to Ricaurte and the MIND team is determined to approach this initiative in collaboration with the physicians and researchers at surrounding institutions including the Universidad Nacional de Colombia and Universidad del Valle in Cali, Colombia.
“The screening endeavors and treatment research that we hope to do in Ricaurte will benefit the worldwide Fragile X community and I look forward to working with the National Fragile X Foundation, the MIND Institute, the Special Kids Foundation and the Fragile X Association of Colombia to further this research” said Dr Hagerman who is on the Scientific and Clinical Research Committee and Emeritus Director of the National Fragile X Foundation.
(SACRAMENTO, Calif.) — Researchers at the internationally respected UC Davis MIND Institute are collaborating with scientists at two Colombian universities to investigate the very high rate of Fragile X-related disorders in one region in the South American country.
Named the “Colombia Project of Hope,” the initiative aims to advance Fragile X research and benefit individuals with Fragile X-related disorders in the United States and around the world by focusing on a recently identified Fragile X “hotspot” in Colombia.
In November 2013, Fragile X researchers led by internationally known Fragile X investigator and MIND Institute Medical Director Randi Hagerman, visited the Valle del Cauca District and the small town of Ricaurte, which for years has been known to have a very high prevalence of individuals with intellectual disability, formerly termed mental retardation.
“Our goal is to advance Fragile X research worldwide by turning Ricaurte from a village of despair to a village of hope with new treatments for Fragile X syndrome and related disorders,” Hagerman said.