Thank you, Madam Chair and members of the subcommittee. I appreciate the opportunity to speak with you on behalf of more than 100,000 Canadians who live with Parkinson's today, and their families, and on behalf of the thousands of volunteers and donors who support the work of Parkinson Society Canada.
Parkinson Society Canada was founded in 1965 by a small group of people with Parkinson's in Toronto. Today the organization stretches across Canada with regional partners in every province and with 235 community-based support groups from coast to coast. Our collective work is about making connections, ensuring that individuals living with Parkinson's are connected to the information and support they need throughout their disease; investing $1.2 million each year to fund Canadian investigators to make connections through basic clinical and psychosocial research; connecting researchers across Canada to ensure that knowledge is being shared and translated into best practice; and connecting people living with Parkinson's to policy-makers such as yourselves to ensure that the impact of the Parkinson's experience is understood and the needs of our community are met. Parkinson Society Canada is the only national organization in Canada doing this work.
I am delighted to share the panel today with Greg McGinnis, who will educate all of us about the realities of young-onset Parkinson's, and with two of Canada's best minds in Parkinson's clinical practice and research, Dr. Stoessl and Dr. Schlossmacher.
I'd like to use this opportunity to highlight some important issues and needs facing Canadians with Parkinson's and their families that are often overlooked.
There is no known cause of Parkinson's and there is no cure. The number of people with Parkinson's is expected to double in the next 20 years. Parkinson's is not a disease of the elderly and it is not a natural part of aging. Parkinson's affects adults across a wide range of ages, all too often in their thirties, forties, and fifties, when they are busy building careers and raising families. Most are forced to leave the workforce only a few short years after their diagnosis, facing unplanned early retirement and the harsh reality of poverty as an added consequence of Parkinson's disease.
Parkinson Society Canada has developed six recommendations about how the Government of Canada might adjust existing finance policy to help individuals and families living with Parkinson's experience greater financial stability and security. We would be happy to provide the documents to the subcommittee.
Caregivers, often spouses or family members, play a vital role for people with Parkinson's. They are an integral part of the care team. Remembering that Parkinson's is a degenerative disorder that cannot be slowed or halted, the reality is that people with Parkinson's experience an ever-increasing need for care and support from those around them. Very often caregivers provide the support to the detriment of their own personal health and financial well-being. More must be done to prioritize and address the needs of this invaluable volunteer workforce, without whom governments at all levels would be overwhelmed. Understanding the delivery of health care is a provincial and territorial mandate. It is important to note that the best care for Parkinson's disease is delivered by a multidisciplinary team with expertise in Parkinson's.
I'm sure Dr. Stoessl will touch on the role of the movement disorders clinic. However, I'd like to emphasize that in many provinces, wait-lists are long, as much as 18 months. As one might expect, these centres of excellence are located in urban centres, meaning that rural residents must travel some distance to access care.
Canadians with Parkinson's tell us that their lives would be significantly improved if people within their communities understood more about Parkinson's and brain disease overall. As Parkinson's progresses, the outward symptoms mask the person inside. People often feel misunderstood and minimized. Frustration, embarrassment, and communication challenges build as they become more and more isolated from their families and their communities. The general lack of awareness and understanding results in continuing stigma and makes way for many types of discrimination.
One of the areas of concern to the Parkinson's community is discrimination on the basis of genetics. Legislation is urgently needed to protect the privacy of individuals' genetic information and to protect Canadians from unfair treatment on the basis of often-misguided perceptions about the role that genetics can play in developing brain disease.
Parkinson Society Canada is an active member of the Canadian Coalition for Genetic Fairness, and again, we would be happy to share detailed information on this issue with the subcommittee.
Parkinson Society Canada has been raising these issues with policy-makers and parliamentarians for many years. Unfortunately, due to the relatively small size of the Canadian Parkinson's community, these issues have been overshadowed by other conditions with perceived greater impact than Parkinson's.
It was for this reason that Parkinson Society Canada played a lead role in establishing Neurological Health Charities Canada, a growing coalition of organizations that represent and serve Canadians living with neurological conditions.
As you may know, the NHCC has proposed a framework for building a national brain strategy to the Government of Canada. This framework has unanimous support from the 24 members of NHCC because it addresses the most need across the continuum of neurological conditions. I'm sure that in the presentations you may get a sense that there are differences, but there certainly are a lot of commonalities that can benefit all conditions if we look at it in a holistic way.
We sincerely hope that this subcommittee will support the community's call for a comprehensive and coordinated brain strategy. We are very pleased with this government's commitment of $15 million to fund Canada's first ever national population health study on neurological conditions. I sit on the implementation committee for this study, and am delighted with the level of collaboration and innovative thinking that have shaped this project being co-led by Neurological Health Charities Canada and the Public Health Agency of Canada. So thank you.
We are also grateful for the work of this subcommittee, and for the individual interest and dedication each of you have shown this cause. We appreciate the opportunity to present the specific issues and needs facing Canadians with Parkinson's and their families. We hope this subcommittee shares our perspective regarding the urgent nature of this work.
In 2013 the World Parkinson Congress will be coming to Canada. We will have an opportunity to showcase to the world what we in Canada have done in Parkinson's. We will have an opportunity to lead the way and profile and enhance what we do as an organization supporting people with Parkinson's. We will be able to stand proud that the results of the neurological subcommittee's work and the work of this committee will hopefully result in actions for the benefit of people living with Parkinson's.
Thank you.