Conquering brain disease requires both private and government funding

Naomi Azrieli is chair and CEO of the Azrieli Foundation and chair of Brain Canada

Fifty years ago, when someone was diagnosed with cancer, it was often an automatic death sentence. Likewise at that time, a heart attack was met with the attitude that the patient should be made comfortable, but not expect to survive for long. Thankfully, we have seen how scientific research has influenced the treatment and outcomes of both cancer and heart disease.

Today, the burden of brain disease – medically, financially and emotionally – has surpassed that of cancer and heart disease combined. One in three Canadians is directly affected by a brain disorder. These are diseases that demand a lifelong commitment.

My brother and two other members of my extended family have Fragile X syndrome, the most common inherited cause of intellectual disability and the most common known cause of autism. Having members of our family with a brain disorder has opened my eyes to the desperate need for more research, and also to exciting developments in Canadian brain science and ways to support it.

In order to understand and treat the complexities of brain health, be it Alzheimer’s or addiction, concussion or schizophrenia, stroke or autism, there are three priorities: to provide ample opportunities for scientists, to secure continuing funding from government and to enlist the support of non-governmental donors such as foundations, corporations and individuals. This is how we will ensure that scientists continue to excel and do world-class research.

I am not a scientist, nor am I able to decide where government money should be directed. But as chair and CEO of the Azrieli Foundation, I have thought long and hard about the most effective way to invest in this area, often called the final frontier of scientific research.

In this search, I have come to share the vision of Brain Canada, a foundation that supports scientists and researchers to understand the brain, both in health and illness, and thereby improve lives and influence society. Brain Canada believes that it is important for the public to have a direct voice in shaping brain research priorities, with researchers free to present their best ideas to tackle the areas with the greatest potential.

Brain Canada has made the case for approaching the brain as a single, complex system, rather than treating the range of brain disorders as somehow disconnected. This approach resonated with me. My brother, after all, is more than the sum of his parts, and more than a collection of disconnected neurological functions.

Six years ago, the federal government entered into a collaborative partnership with Brain Canada, providing $100-million to create the Canada Brain Research Fund (CBRF). Brain Canada’s network of partners, sponsors and donors doubled the funding provided by the federal government, matching it on a 1:1 basis, thereby injecting $200-million into Canadian brain research.

A key to Brain Canada’s success in bringing new funds into the brain-research ecosystem lies in the rigour of the organization’s scientific review process, which gives donors and partners a trusted mechanism to ensure projects are chosen on the basis of excellence and innovation – from basic research to applied research leading to treatments. Another important aspect is the support of research teams, encouraging scientists from different institutions and with different approaches to collaborate and work together, breaking down silos and disseminating new ideas.

Our foundation partnered with Brain Canada to create the Azrieli Neurodevelopmental Research Program. The goal is to develop new diagnostics and treatments and to improve the quality of life for those affected by neurodevelopmental disorders and their families. In collaboration with Brain Canada, we have funded seven exciting high-potential projects. (Indeed, we were thrilled that The Globe and Mail featured one such project, led by Evdokia Anagnostou).

The researchers we are co-funding with Brain Canada have already made important discoveries. One group has found promising evidence that an FDA-approved oral diabetes medication can correct behaviours and structural defects in Fragile X syndrome. Other groups are working on identifying ways to predict and diagnose autism as soon as possible, which can enable earlier intervention and a better quality of life for children and their families. Taken together, the work of the teams we fund and of the many other excellent researchers promises to transform our understanding.

By strategically leveraging government funding with private donor and partner support, and thereby providing funds that would otherwise not be available to Canadian scientists, Brain Canada’s model has been a powerful catalyst towards great research. Nearly two years ago, the government acknowledged this success, by adding $20-million to the CBRF. Yet Canadians affected by brain disorders know that more is needed, and look forward to further support from the government. We also know that although such investments are crucial, world-class brain research concerns all of us and governments should not carry the burden alone. Private and charitable partners have a responsibility to contribute and a role to play.