Expertise

How will Research Assist?

The unique biological, intellectual, educational, and emotional profiles of people with Down syndrome have rarely been studied, described or clearly understood. In the absence of research that is specific to Down syndrome and without explanations for the phenomena associated with the syndrome, inaccurate and unhelpful characterizations have gone unchallenged, i.e.:

Research which documents the actual situations of people with Down syndrome has led to more complex, productive thinking:

  • People with Down syndrome are rarely given autonomy in decision making, which can lead to reactions of stubbornness.
  • The average lifespan of people with Down syndrome is increasing dramatically, as they receive improved healthcare.
  • People with Down syndrome experience the full range of emotions but are rarely asked about their experiences of friendship difficulties, loneliness and grief.

Targeted Down syndrome-specific research, then, may shed light on

  • Irregularities in service across the regions of Canada
  • Helpful support plans that are being used in one area of the country, and could be expanded into other areas
  • Issues that develop as innovations for people with Down syndrome are implemented.

The Down Syndrome Research Institute is now the research arm of the Down Syndrome Foundation, and Down syndrome Canada. It is an exciting, passionate dedication that plays an essential role in achieving the Foundation’s ambition of improving the day-to-day life of people with Down syndrome and their families across Canada.

Founded in 2007 by Andy Loebus of London, Ontario, it ran summer schools/camps, conducted public education campaigns, and engaged in a research agenda with the Educational Psychology Department of McGill University. This influential work was suspended when Andy became ill in 2017, and it seemed that it would not be revived after Andy’s premature death in 2022.

Please be in touch if you have a topic that warrants research, or if you would like to participate in future research projects.