'Support for fragile X syndrome needed,' McGill researcher

First annual conference to address needs of fragile X children, parents and educators

Researchers, educators and parents are getting together this weekend to discuss ways to bolster support for children with fragile X syndrome (FXS). McGill University's Neuroscience Laboratory for Research and Education in Developmental Disorders is holding the "First Annual Fragile X Syndrome Parent/Teacher Day" on Saturday, October 30.

The gathering is being organized to help experts and parents review the behavioural problems, educational needs and the availability of social services or support for FXS children. All media are welcome to attend this important event:

• When: Saturday, October 30, 10 am to 3 pm
• Where: Room 100, Duggan House (3724 McTavish St.)

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 in retaining information over short periods to problems with linguistic processing. Patterns that distinguish FXS children include impulsivity, hyperarousal 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, and most children with fragile X are 'coded' under the autism category."

Indeed, many parents and educators of FXS children lack relevant information or the appropriate resources. "We hope this FXS conference will serve as a building block to establish a future parent-teacher network," says Cornish. "Our goal is to pinpoint appropriate interventions that can help FXS children develop to their full potential."