Available Resources

Press releases are used in the ALS landscape to communicate important information to journalists and the public. Press releases may be released by pharmaceutical companies, academic and research institutions, and non-profit organizations, amongst other outlets. It is important to critically analyze information from a press release to help you become a well-informed consumer of ALS information.

Glossary of Genetic Terms

While travel can present unique challenges for people with ALS, a comfortable travel experience is possible with planning and patience. This fact sheet offers tips for planning a trip while living with ALS, whether it is a local day trip or a longer excursion including air travel. These tips may be helpful for things like running errands or visiting a specialist in another city, too.

It is important for people with ALS to feel closeness and connection with their intimate partners, and to experience healthy sexuality, whether with a partner or solo. While ALS does not affect sexual functioning directly, the disease progression affects mobility, mood, strength, and breathing, so creativity and experimentation may be required to achieve satisfying sexual intimacy.

Primary Lateral Sclerosis (PLS) is a rare progressive neurodegenerative disease which is similar to ALS. However, ALS and PLS are not the same thing. Unlike ALS, PLS only affects the upper motor neurons. ALS affects both the upper and lower motor neurons.

ALS is a progressive and fatal neurodegenerative disease that does not yet have a cure. When caring for you, your healthcare team will strive to maximize quality of life from the time you are diagnosed until end-of-life.

Kennedy’s Disease is a rare genetic disease with symptoms that are similar to ALS. It is also called spinal and bulbar muscular atrophy.

People living with ALS require increasing levels of care as their disease progresses. Most of the time, responsibility for personal care is taken on by caregivers such as family and friends.

ALS Canada helps people diagnosed with ALS to cope with the daily challenges of decreasing mobility and communication ability. Access to equipment and assistive devices is essential for the safety, comfort, independence, and functioning of a person living with ALS.

The ALS Society of Canada’s (ALS Canada) vision is a future without ALS. To achieve this vision, new treatments that can help with symptom management and slow down and someday stop the progression of amyotrophic lateral sclerosis (ALS) need to undergo clinical trials on humans to ensure that they are both safe and effective before being approved for widespread availability.

Today, more is known about this relentlessly progressive motor neuron disease which causes paralysis and leads to the death of approximately 1,000 people in Canada each year. And while the prognosis of ALS is variable and its progression difficult to predict, (i) we know that it can move with startling swiftness – leaving a very narrow window of time to slow it down, often further compressed by delayed diagnosis.

In this Toolkit, you will find the following resources: Template Meeting Request, ALS Fact Sheet, Sample Meeting Flow, Eversana “How to Tell Your Story”, The Time is Now Meeting Deck (Provincial), The Time is Now Meeting Deck (Federal), and Report Back Form.​

A resource that supports and empowers advocacy efforts aimed at improving the lives of people living with ALS (Amyotrophic Lateral Sclerosis).

Receiving an ALS diagnosis is devastating for all involved. It is normal to feel lost, frightened and unsure of what to do next or who to turn to.

Form to make donations to ALS Canada.

In the published BPRs, the Working Group highlights that the care and management of patients with ALS should always be patient-focused, with attention to whole person and their emotional aspects of well-being.

To be considered for a volunteer role, please download, complete and follow the instructions outlined in ALS Canada’s Volunteer Application Form.

The ALS Society of Canada (ALS Canada) is committed to a future where anyone living with ALS, or with a known genetic risk of ALS, understands how genetics may impact them. We aim to provide accurate and relevant information, as well as pathways to action for those who wish to access genetic care.