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Living As Pioneers

Any family that has had to face living with a brain disorder also knows what it is to live like a pioneer, stepping into uncharted territory and going off in unknown directions, frequently without the aid of any scientific "map" or treatment options. My family certainly did.

Research into the workings of the human brain has been described as the "last frontier of science" and, especially in recent years, neuroscientists are frequently compared to "pioneers" -- pushing out and enlarging the borders of our understanding in new and wholly unexpected ways. The tag also suggests the need to be creative, open to new ways of seeing and ready for hard work.

Any family that has had to face living with a brain disorder also knows what it is to live like a pioneer, stepping into uncharted territory and going off in unknown directions, frequently without the aid of any scientific "map" or treatment options. My family certainly did. For my family, the terrain shaped by neurodevelopmental disability was filled with challenges and difficulties, but also love and resourcefulness, courage and determination.

My brother and two other members of my extended family have Fragile X syndrome, a genetic condition that manifests at birth and has a range of symptoms: from mild language or math impairment, to social problems and autism-like behaviour, to severe retardation. The most common inherited cause of intellectual disability and the most common known cause of autism, it occurs in one among 4,000 males and one among 6,000-8,000 females worldwide.

These statistics mean that the incidence of Fragile X is similar to that of many cancers -- a fact that may come as a surprise, given that the syndrome is virtually unknown. Brain disorders in general have a low public profile and yet, about half the Canadian population has had a brain disorder impact their family. One in three will have a disease, disorder or injury of the brain, spinal cord or nervous system at some point in his or her life.

While Fragile X may have a near-invisible profile today, the disorder did not even have a name in 1958, the year my brother was born. That was also the year the Nobel Prize was awarded to Fredrick Sanger for his discovery that genes act to regulate chemical events in humans.

My parents had no way of knowing that their child's disability was linked to this scientific breakthrough, nor did they have any understanding of how Fragile X would affect his life. Most parents of that era, faced with the birth of a child with a developmental disability, would have felt ashamed and stigmatized, and would have either institutionalized the child or otherwise kept him or her hidden from the world.

In my family it was different. We had a strong intuition that my brother could learn and that he could become a productive member of society. Without the benefit of science and in the face of society's fear and misunderstanding of neurodevelopmental impairment, my parents taught my brother to read and write, included him in the family's social and communal life, and were active in the nascent field of special education. Our pride in him and persistence bore fruit. Today he lives independently, has a job and enjoys a wide range of activities in his free time. His life has meaning and purpose -- precisely what all parents want for their children.

According to Brain Canada, there are roughly 16.5 million Canadians whose families are affected by brain disorders. For these families, and all Canadians, the future looks much brighter than it did a half century ago. We no longer see the brain as a collection of specialized parts -- a 'black box' in which everything stays within its location and function.

Researchers now understand it as a dynamic and interconnected system that can rewire and rearrange itself should the need arise. Just as cancer is now being explored at the genetic and molecular level -- examining the smallest building blocks in order to better understand their system-wide impacts -- so too is brain research entering a new era of holistic understanding.

This insight is opening new pathways for treatments of a myriad of disorders and disabilities; from Fragile X and autism, to stroke and neurodegenerative disorders associated with aging -- all will benefit from the new research taking place. This revolution will have enormous impact on our understanding of how children's brains develop, on teacher training and on the classroom experience. Seeing the brain as an integrated system will trigger breakthroughs that cut across various medical and scientific disciplines.

The advances in brain research will be exponential, and they will ripple throughout the health system. And Canada, home to some of the world's foremost neuroscientists, has the potential to lead the way. Yet this will not happen without broad public understanding and financial support. Scientists tend to follow the money -- not for personal gain, but for the critical mass of staff, resources and equipment that is the lifeblood of advanced research.

We all appreciate that cancer research benefits enormously from great public awareness and a concerted marshaling of our society's resources to understand and combat the disease. Fifty years ago, a diagnosis of cancer was essentially a death sentence. Not any more. And fifty years ago, the diagnosis of neurodevelopmental disorder frequently meant life in an institution, a diminished existence, shame and despair. Not any more. With our help, Canada's pioneering neuroscientists will bring us closer to this last frontier of science, and the hope that pioneering parents and families will have many more tools and treatments to help their children live independent, meaningful and productive lives.

Dr. Naomi Azrieli is Chair and CEO of the Azrieli Foundation. Together with federal funds provided through the Canada Brain Research Fund (a collaboration between the Government of Canada and Brain Canada) the Foundation recently donated $8.5 million over five years to launch the Azrieli Neurodevelopmental Research Program. Brain Canada matches private and non-governmental donations dollar-for-dollar with federal funds, up to $100 million, in support of innovative brain research. To learn more about how you can get involved, visit

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