Welcome Address – NeuroDevNet Sixth Annual Conference on Brain Development
Good afternoon, everyone. It is my pleasure to welcome all of you to NeuroDevNet’s 6th annual conference on brain development.
As some of you might know, I was at one time the Communications Director for our former Prime Minister Jean Chrétien. Of course, I have many stories from those days. This one relates – albeit loosely – to the very topic we are gathered here to explore.
For better or for worse, deeper aspects of the brain cannot be explained so succinctly. As you all know, the brain is hugely complex and mysterious. Canada’s answer to unlocking the mysteries of the brain and neurodevelopmental disorders was the extraordinary creation of NeuroDevNet, the only Canadian Network of Centers of Excellence in Brain Development. In the words of Dr. Dan Goldowitz, the scientific director of NeuroDevNet, the network links together a multi-disciplinary team of almost 300 researchers, clinicians and technicians at 24 Canadian and 7 international universities. NeuroDevNet is unique in the world. It is a cross-disciplinary, cross-disorder network. The network has been described as “Heroic” by international reviewers. In its journey of research in neurodevelopmental disorders, NeuroDevnet makes a difference, has profound impact in the lives of children and families.
The World Health Organization tells us that one in six children is born with a neurodevelopmental disorder. This estimate includes disorders such as autism, fetal alcohol spectrum disorder, attention deficit hyperactivity disorder, cerebral palsy and epilepsy, as well as many other disorders that are less well known.
Canada’s innovative investment in science and research, NeuroDevNet is engaged and focused on the future, in the next five years examining how genetics, epigenetics, imaging, gaming technologies, registries, bioinformatics and funding that can make a difference in the lives of that one child in six.
Just as it takes a village to raise a child, it takes all kinds of people within that village to raise a child with a neurodevelopmental disorder.
It takes parents, siblings, grandparents.
It takes scientists and researchers.
It takes doctors, nurses and caregivers.
It takes teachers and therapists.
It takes advocates.
It even takes politicians! And it takes storytellers.
Barely a couple of weeks ago, the world lost a very famous storyteller: Dr. Oliver Sacks.
His obituary in the magazine Nature tells us that Sacks “viewed himself as a storyteller who through observation of his patients came to think of neurological disorders as challenges in finding a new equilibrium. In response to injury and disease, people go through a phase of adaptation and reorganization, often mobilizing inner resources that have previously lain dormant.” To Sacks, “the brain is an organ that should be understood holistically, as an organism capable of plasticity and compensation.”
The New York Times described him as a “polymath and an ardent humanist” who shed light on the strange and wonderful interconnectedness of life – the connections between science and art, physiology and psychology, the beauty and economy of the natural world and the magic of the human imagination.”
He was concerned with the impact that his patients’ neurological disorders had on their day-to-day routines, their relationships and their inner lives. He told stories that described the costs and isolation these individuals experienced, but, to quote the New York Times again, “the stories emphasized people’s resilience – their ability to adapt to their deficits – enabling them to hold onto a sense of identity and agency. Some even find that their conditions spur them to startling creative achievement.”
This past year the ASD community has had the opportunity to discover the creative talents of the young filmmakers from Spectrum Productions of Montreal. These young men and women, all autistic, bring us into their world of creation and animation.
Spectrum Productions, a non-profit, provides them wity technical and creative expertise, instruction and encouragement enabling them to direct and create films and cartoons, write scripts, act and draw on their abilities and gain confidence in themselves and their identity as artists. It is this holistic approach that is making them “winners”.
The “interconnectedness” that Oliver Sacks reflects on is what drives all of you at NeuroDeveNet to make the commitment to cooperate and break down silos of expertise and work with individuals and organizations that, though like-minded, are also different. I applaud you for being open, curious and collaborative, for diversifying your network and working with partners to heighten public awareness of the importance of helping those who cannot effectively advocate on their own behalf.
Each year, NeuroDevNet’s Day on the Hill brings enlightenment to politicians about the state of science in support of neurodevelopmental disorders. Trust me. You have made inroads with many of us on the Hill. Please continue to reach out to and build on your contacts with federal decision-makers.
I cannot understate the value of the collaborations you already have in place and the many others you will certainly engage in. Locally, thanks to support and funding from NeuroDevNet and other organizations, Citizen Advocacy Ottawa is now able to increase its capacity to identify and meet the needs of children, youth, adults and families affected by FASD.
NeuroDevNet’s emphasis on knowledge translation and is yet another critical step for making the difference. By sharing the results of your scientific breakthroughs with doctors and caregivers, new knowledge and best practices are being put into practice and eventually will attract the large public attention and funding they warrant.
It is my hope as a politician here today, that news of your scientific advances will engage more theorists and storytellers, that more stories will be told with deep meaning for the doctors and the patients, for the teachers and therapists and for the politicians.
We share our humanity in many ways and, today, we are all advocates. We are all interconnected.
Like the young filmmakers, every child with a neurodevelopmental disorder wants and needs what all of us want and need. That is to realize our human potential. This is a universal right. Not one. Not two. Not three, four or five – but six!
May Oliver Sacks’s deep curiosity and sense of humanity guide us.