Raising awareness of ALS and advocating for the needs of people affected by the disease is a critical part of our ongoing work as a community.

Working together, we can amplify our voices so that more people understand the difficult realities of the disease and are motivated to take action.

ALS has become a better-known disease since the Ice Bucket Challenge in 2014.

Through ongoing awareness initiatives, we continue to educate people about the enormous challenges facing families affected by ALS.

By doing media interviews, speaking at events, and marking ALS Awareness Month in June of each year we work to build understanding about the disease and inspire support. Our ALS Ambassadors are central to this effort – these passionate community members have chosen to publicly share their personal experience with the disease to boost awareness and inspire others to take action.

People and families living with ALS require tremendous support.

Their needs are constantly evolving as the disease progresses. Even as new treatments are approved, they are not always easy to access. That’s why advocacy is so important: we believe that government can do more to support people living with ALS.

Here are just a few of the ways we are championing issues of importance to the ALS community to influence change:

  • We work with the ALS Society of Canada to advocate federally for new ALS therapies to be reviewed and approved within condensed timeframes.
  • We advocate provincially for the cost of new ALS therapies to be publicly covered so that patients don’t have to pay out-of-pocket, and for coverage decisions to be made quickly.
  • As a member of Neuro Partners, a collaboration of neurological disease charities in Quebec, we educate Quebec elected officials about challenges such as home care, housing and support for family members providing support to people living with progressive neurological disease. Other members of Neuro Partners are MS Canada (Quebec Division), Parkinson Quebec, Muscular Dystrophy Canada (Quebec Division), and the Huntington Society of Quebec.

Advocacy Committee

In addition to serving on the ALS Society of Canada’s national advocacy committee to address federal advocacy issues relevant to the ALS community, we lead an advocacy committee focused on provincial issues facing the ALS community. Co-chaired by community members Norman MacIsaac and Mario Hudon, the committee meets regularly to identify and advance advocacy issues in Quebec. Thank you to all our committee members for volunteering your time and talents!

We are not afraid to talk about ALS. We both have the same goal: speaking up and speaking out on behalf of everyone affected by this disease so we can all sustain hope. We have to keep moving steadily towards the day when ALS will be treatable.
Mario Hudon,
who has been living with ALS since December 2020, speaks about his awareness and advocacy efforts with fellow ALS community member Norman MacIsaac, who was diagnosed with ALS in 2014