Scientists at the new $3.5-million Down Syndrome (DS) Research Foundation and Resource Centre in Burnaby, BC, will be attempting to determine how young people with the syndrome acquire skills and learn. “We now have a focal point for looking into DS research and education,” says Josephine Mills, executive director of the facility, which is drawing researchers from 3 BC universities.
“There are a few clinics in other parts of the world, but this is the only centre driven by both the community and science,” says kinesiologist Dan Weeks of Simon Fraser University (SFU), who has been conducting research into DS for more than 15 years.
DS affects 1 in 900 babies and is the largest single cause of developmental delays in Canadian children. “In many respects it is the most neglected,” says Mills. “Now we can educate the educators and the families.”
The facility, which is developing a pamphlet for health care professionals, encourages children and young adults with DS to attend educational programs and services and take part in research projects. It is funded by the province and private donors, and will also host summer courses, including a computer camp for children with DS.
Mills, who started the Canadian Down Syndrome Society, says young adults with DS are auditing university courses in Alberta. “They do really well with just a little support. It is becoming realistic for them to aim at participating in university programs.”
“It is my dream to see an individual with Down syndrome graduate from SFU,” says Weeks. — Anne Tempelman-Kluit, Vancouver