The Michael Cameron Fund, a trust fund administered by The University of Queensland, welcomed a new generation member to their board last week in order to continue supporting research into Down syndrome.
The fund was established in 1985 by the family of Michael Cameron, who was one of the children recruited at birth in 1978 for UQ’s Down Syndrome Research Program (DSRP) a longitudinal study of children with Down syndrome.
After Michael passed away at age seven, his family established the fund in his memory in recognition of the value of research to families.
This year, the board’s AGM was of great significance, as they welcomed Michael’s sister Wendy to the board – the first new generation member since its inception.
Currently led by Associate Professor Monica Cuskelly from the School of Education, the DSRP has been in place for over 30 years, making it the world’s longest continuous study of Down syndrome.
Associate Professor Cuskelly said the program was providing unique and important insights into the health and development of those with Down syndrome as well as information about family functioning.
« The longitudinal study has collected data about cognitive development, motor development, temperament and family functioning, including the impact on parents and siblings on having a child with Down syndrome in the family, » Associate Professor Cuskelly said.
Two almost complete cohorts of children born in the greater Brisbane area with Down syndrome (born January 1973 to December 1975 and May 1976 to December 1978) form the longitudinal group.
Other children and families have been recruited at various times to take part in specific individual projects and now more than 200 families contribute to the research conducted by the DSRP.
« The longitudinal study debunked many myths about Down syndrome children such as that they couldn’t read or write, » she said.
« However these young adults require continuing education in literacy and numeracy skills after they leave school to help them integrate better into their communities. »
Associate Professor Cuskelly said in addition to the longitudinal study, the Michael Cameron Fund had been significant in supporting many smaller research projects that were providing evidence for larger projects to be conducted.
« Just this year we received an ARC to look at post school options and the lifestyle choices for young adults with Down syndrome and other intellectual disabilities, » she said.
Donations to the Michael Cameron Fund are tax deductible and should be sent to the University of Queensland Trust Funds Michael Cameron Fund, The University of Queensland, 4072.