“Our goal is advance fragile X research worldwide by turning Ricaurte, Colombia from a village of despair to a village of hope with new treatments for fragile X syndrome and related disorders.” — Randi Hagerman
An international collaboration
Researchers at the internationally respected UC Davis MIND Institute have formed a collaboration with scientists at two universities in Colombia, the Universidad del Valle in Cali and the Universidad Nacional in Bogotá, to investigate the high incidence of fragile X-associated disorders in one region, the Valle del Cauca District. Named the Colombia Project of Hope, the initiative aims to advance fragile X research and benefit individuals with fragile X-associated disorders in the United States and around the world by focusing on the recently identified fragile X hotspot in the small South American nation.
Solving a medical mystery
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, formerly termed mental retardation. Hagerman and her team from the Fragile X Research and Treatment Center tested many of Ricaurte’s residents, using a blood-spot test developed by Flora Tassone, UC Davis professor of biochemistry and molecular medicine. Conducted in partnership with Colombian scientists, the testing found a very high incidence of fragile-X related mutations among the population — the reason for the region’s very high levels of intellectual disability and the solution to a decades-old medical mystery.
The birth of a new initiative
Upon determining the high incidence of fragile X disorders in and around Ricaurte, the MIND Institute investigators determined that researching this fragile X hotspot could offer additional clues to the development of fragile X and its incidence in other populations around the world. They determined to approach the initiative through collaborating with their colleagues at research institutions in Colombia. The Colombia Project of Hope was born. The project’s aims:
- Screen for fragile X mutations in larger populations in Colombia, to determine the prevalence of fragile X syndrome in Ricaurte and throughout Colombia.
- Initiate outreach programs addressing treatments from the medical, education and family viewpoints for those who are positive in the screening.
- Educate physicians, therapists and health-care providers throughout Colombia about fragile X syndrome, premutation involvement, autism, and related neurodevelopmental disorders, to increase the pool of potential fragile X research subjects.
Project of Hope team members
The MIND Institute clinicians and researchers who visited Colombia and their in-country collaborators, as well as Sergio Villada, president of the Special Kids Foundation, Miami, who organized the first Colombia visit in November 2013, spearheading establishment of the Asociación X Frágil Colombia. »
Team members include:
- Randi J. Hagerman », MIND Institute medical director
- Sergio Aguilar-Gaxiola, director, UC Davis Center for Reducing Health Disparities
- Reymundo Lozano, professor of pediatric genetics
- Flora Tassone, professor, biochemistry and molecular medicine
- Luis Carvajal, professor, biochemistry and molecular medicine
- Robert Miller, Human Service Consultant
- María Díez-Juan, MIND APPs Study coordinator
- Sergio Villada, president, Special Kids Foundation, Miami
How you can help advance fragile X research worldwide
Generous donations from the MIND Institute, the institute’s Fragile X Treatment and Research Center and the Special Kids Foundation made the first visit to Colombia possible. We hope others will be moved to support the project, transform the lives of the residents of Ricaurte, and advance biomedical research in through this unique collaboration with the Central American researchers, as well as bringing health-care providers education and new treatments to the people of Colombia living with fragile X. Thank you for your support!
- Under Please Select Recipient select MIND Institute
- Under Special instructions for this gift type in The Colombia Project of Hope
- If donating from outside the USA, please, enter your full address under Special instructions for this gift type in The Colombia Project of Hope
Donate by mail
- Under Areas gifts may be designated to, check Other and print The Colombia Project of Hope