The Michael Cameron Fund: 31 years of supporting Down syndrome research
Tuesday 21 March 2017, 5pm for 5.30pm – 6pm UQ Art Museum, St Lucia campus.
It is my very great pleasure to join you this evening for this special occasion.
The American essayist, philosopher, abolitionist and some-time forest-dweller Henry David Thoreau was a fierce critic of many things in his time – even of the act of giving. It was with much cynicism that he observed that “philanthropy is almost the only virtue which is sufficiently appreciated by mankind”.
As we consider the significance and impact of the Michael Cameron Fund this evening, Thoreau’s observation doesn’t quite fit. It’s true that the Cameron family has had regular contact with UQ researchers dating back to 1978. But, as an institution, we have not sufficiently shown our appreciation, our admiration or our gratitude – at least not in a formal manner. Tonight is our opportunity to change this. And what better day to do it, than on World Down Syndrome Day.
To be fair to Thoreau, his objection to philanthropy was more to those who gave ostentatiously or out of self-interest, whereas he valued those who gave “their heart and soul and life” towards the goal of helping others. No doubt he would approve then, of the establishment of the Michael Cameron Fund and the research it has enabled.
I find the story of the fund’s establishment to be very touching. I remember 1978 very well – it was the year I graduated from UQ. It was also the year a longitudinal study of babies with Down syndrome and their families began at UQ.
The Down Syndrome Research Program tracked the first generation of children with Down syndrome who, rather than being institutionalised as was the norm, were instead cared for by their families and educated at school. Many continue to live in the community.
One of the participants in this study was, of course, young Michael Cameron – a son, brother, uncle, and significant person in the lives of everyone here.
After his far too early death at just seven years of age, in 1985, the Michael Cameron Fund was generously established by his parents Maureen and Barry, his late aunt Mary Gavin (who also left a bequest to the fund) and others in the family, to support the Down Syndrome Research program. In the time since the fund was established, a number of other have made contributions, and we thank them all.
The positive impact of the study has been immense.
Next year, the longitudinal study will celebrate 40 years of continuous research, making it – we believe – the oldest, most complete study of its kind anywhere in the world. Other children and families have been recruited at various times and now more than 200 families contribute to the research.
Over the past 39 years, the longitudinal study has collected data about cognitive development, motor development, mother-baby interactions, temperament and family functioning, including the impact on parents and siblings on having a child with Down syndrome in the family.
It has dispelled a number of misconceptions about Down syndrome, such as the belief that cognitive development plateaued at about age 12 or that children with Down syndrome could never hope to read or write effectively.
In fact, since 1998, UQ has been delivering the Latch-On literacy program for adults with intellectual disabilities. This was established in response to the needs of young adults in the longitudinal study. It is the only such program that has been validated by research and its success has led to its adoption internationally in Canada and Ireland through licensing agreements.
A current round of involvement with the longitudinal group is collecting data on adaptive, cognitive and receptive language functioning, as well as new measures related to mental health issues and dementia.
Without a doubt, the research you have enabled through the Michael Cameron Fund has led to significant improvements in the lives of people with Down syndrome across the world – so much so that babies born today with Down syndrome can look forward to dramatically different lives from those first participants in the longitudinal cohort.
Given this, it should come as no great surprise that the UQ Down Syndrome Research Program has received a World Down Syndrome Day award in the scientific research category from Down Syndrome International — a wonderful outcome.
Much like your family, my own family has a strong historical connection to UQ – my father taught here, my siblings and I studied here, and my son began his engineering studies here.
It is both humbling and a cause for pride to know that the NV Varghese Prize for Comparative Education, funded by a bequest from my late father, continues to support educators and researchers in the School of Education with their investigation and discovery.
I can only imagine the pride and joy that you must feel at having enabled so much research that has helped people with Down syndrome and their families around the world, and that this work will always be associated with the name of Michael Cameron.
It is a great pleasure to host many members of the extended Cameron family here today:
- Maureen and Barry Cameron – Michael’s parents
- Michael’s sister, Wendy; his brother David – and their families
- A special thought for Michael’s brother Paul and sister Susan who could not be here this evening.
On behalf of the Senate and all at UQ, I sincerely thank you for the gift you have made, and for your support of Down syndrome research at UQ.