Available Resources

Raising our voices and engaging with candidates during the election is a critical way to keep ALS on the radar.

Advocating for ALS Care in Ontario

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.

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).

Approaching government through a combination of channels at an organizational level and individual level puts the ALS community in a better position to make our voices heard.

Earlier this year, manufacturer Amylyx announced that it plans to pursue Health Canada approval for its AMX0035 therapy. We’ve updated the blog post we first published back in 2018 about how new drugs become accessible in Canada to help orient you to the steps involved, their purpose, the milestones along the way and the timelines involved.

In December 2017, the federal government proposed amendments to the Patented Medicines Regulations. These guidelines govern how the Patented Medicine Prices Review Board (PMPRB) sets the price at which companies sell their drug to distributors across the country.

With the 2019 federal election campaign underway, are you curious about what the parties are saying about the issues that could affect Canada’s ALS community? ALS Canada asked each of the major parties what they would do, if elected, to help people and families affected by ALS.