The gathering is being organized to help experts and parents review the behavioral problems, educational needs and the availability of social services or support for FXS children. All media are welcome to attend this important event:
What is so "fragile" about FXS children? Fragile X syndrome is the world's most common form of hereditary mental retardation, with a prevalence of one in 3,500 males. (Girls with FXS usually have milder levels of intellectual difficulties than boys).
Over 1,500 children across Quebec have FXS. Physical features associated with the condition include a long, elongated face with large prominent ears and forehead. Symptoms range from difficulty to retain information over short periods to problems with linguistic processing. Patterns that distinguish FXS children include impulsivity, hyper-arousal and anxiety. Many affected boys display autistic-like features or pervasive developmental disorder.
"Unfortunately few resources are available in Montreal and Quebec to inform parents, clinicians and teachers about the syndrome," explains Kim Cornish, director of McGill's Neuroscience Laboratory for Research and Education in Developmental Disorders.
"There is no Quebec chapter for families to meet and bring in professional expertise to address FXS concerns. Worse, the disorder is hardly recognized by the education system in Montreal with most children with fragile X are 'coded' under the autism category."
Indeed, many parents and educ