Helping the world understand, detect and treat a devastating genetic disorder
Fragile X syndrome may be a debilitating genetic neurodevelopmental disorder that affects people worldwide, but many doctors don’t know anything about it, including have the resources to properly diagnose or treat it.
The UC Davis MIND Institute is home to many of the world’s leading experts in fragile X syndrome and works globally to teach clinicians and families on the way to identify, test and supply look after those born with the disorder, often related to autism.
This multimedia story documents one such outreach effort in Serbia and therefore the lives of the Cvijetic family and their look for help for his or her 6-year-old son, Demetrije. Diagnosed with fragile X syndrome through the efforts of a MIND Institute-trained physician, the affectionate boy has never attended school, cannot speak or feed himself with a spoon or fork. His parents desperately hope he can someday have a productive life.
MIND Institute experts in fragile X syndrome are available for media interviews about their international work and ongoing research. They include:
Randi Hagerman, a pediatrician and professor at UC Davis, and one among the world’s leading experts on fragile X syndrome and related conditions and their treatment.
Leonard Abbeduto, a psychologist and director of the UC Davis MIND Institute who is internationally renowned for his work on the event and use of language in individuals with intellectual disabilities, including those with fragile X syndrome.
David Hessl, a toddler psychotherapist and professor at UC Davis whose expertise include the cognitive, emotional and behavioral evaluation of youngsters with fragile X syndrome.
The MIND Institute will next bring their expertise to Cartagena, Colombia for the Pan-American Conference of Neurodevelopment: Autism and Fragile X Syndrome, April 16-17 then to Quito, Ecuador for an additional conference April 20-21.