The power of your generosity
As a registered health charity, ALS Canada’s work is powered by generous donors like you who share our vision of a world free of ALS. Your donations enable ALS Canada to provide people and families living with ALS with community-based support services in Ontario, to invest in provincial and federal advocacy initiatives to help bring the ALS community’s voice to government, and to continue to invest in the most promising Canadian ALS research. Learn more about ALS and how you’re making a difference:
What is ALS?
Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is an unrelenting and terminal disease of progressive paralysis that eventually leads to the loss of the ability to move, speak, and breathe.
- Any person has a 1 in 300 chance of receiving an ALS diagnosis in their lifetime. Anyone can develop ALS regardless of gender, socioeconomic status, geography, or race — although it most often affects people between the ages of 40 and 60.
- ALS affects individuals and families in the prime of their lives.
- Each year, approximately 1,000 Canadians will learn that they have ALS, and another 1,000 Canadians will die from the disease. There are nearly 4,000 Canadians living with the disease.
- Four out of five people diagnosed with ALS will die within five years.
- There is no cure for ALS and few treatment options for most people living with the disease.
- It can cost upwards of $150,000 to $250,000 to live with ALS, according to Canadian researchers in 2015. This calculation includes loss of income, modifications to the home, equipment, and additional caregiving support. Equipment shouldn’t be an additional expense. Funds raised help ensure sustainable investments in community-based support services for people and families living with ALS in Ontario, provincial and federal advocacy initiatives, and in the most promising ALS research in Canada.
Your dollars at work
As a registered health charity, ALS Canada’s work is powered by generous donors like you who share our vision of a world free of ALS. How do your donor dollars make a difference? Here are some examples of your dollars at work:
ALS Research
The first gene known to play a role in ALS was identified over 25 years ago. Research discovery since then has accelerated greatly, to the point that there has been more progress in the last five years than ever before. At its most complex, ALS research is a quest to understand the biological causes and progression of the disease in order to develop therapies that will make it treatable. But at its simplest, ALS research represents hope.
Your donations are giving hope to people affected by ALS by funding peer-reviewed research grants exploring new areas of research where we are well-positioned to have an impact. It also strengthens Canada’s ALS research community by fostering collaboration among scientists and building capacity for more scientific discovery.
Community-based support services in Ontario
For a family newly diagnosed with ALS in Ontario, an ALS Canada Community Lead is often one of the first people they’ll meet. Community Leads are system navigators who are knowledgeable in nearly everything a family will face while living with ALS and can answer questions, identify resources, advocate for care and provide practical advice. In addition to visiting people in their home, Community Leads offer support groups for people living with ALS as well as their caregivers.
Over time, someone living with ALS will need different types of equipment as their muscles weaken. For each person, it can be difficult to predict exactly when physical needs might require the shift from a walker to a wheelchair, for example – making it expensive and complicated to quickly access the equipment that is vital to living safely and staying connected to family and friends. That’s where ALS Canada’s Equipment Program comes in for people living with ALS in Ontario: loaned equipment available for longer time periods than the healthcare system provides, delivered at no cost.
Provincial and federal advocacy
Your support of the Revolution Ride gives people affected by ALS a voice with both federal and provincial (Ontario) governments. With the involvement of the ALS community, ALS Canada’s advocacy efforts help decision-makers understand how inefficiencies, inconsistencies, and gaps in the healthcare system are leaving people with ALS behind. By highlighting problems and working with government to identify solutions, we can create momentum for meaningful change.
ALS Canada gives voice to the collective experience of people living with ALS to help drive program and system changes for the ALS community including:
- Equitable, timely and affordable access to therapies to treat ALS
- Improved home and community care for people living with ALS
- Dedicated funding for ALS research and more
We also engage at the local level with health care providers and agencies to help the people we support access services and other resources that can lessen the burden of living with ALS.
Thank you for your support. By participating and donating to the Revolution Ride, you are helping us do more for people living with ALS.
