THE ADVOCATE 347
VOL. 79 PART 3 MAY 2021
• The ALS Society of BC was able to allocate only about $250,000 of
its 2019 funding to research because it is primarily focused on
maintaining its equipment loan program (wheelchairs, bed lifts,
• The right to die by medically assisted suicide has been in front of
the Supreme Court of Canada twice, in 1993 and 2015. Both cases
were brought by people with ALS (both from British Columbia).
• Sean Tagert, a father of a young son, living in Powell River and battling
ALS, chose to die by medically assisted suicide in August 2019.
Vancouver Coastal Health had refused to fund the full-time care
Tagert came to need and instead told him his only option was to
move away from his son and into a care facility in Vancouver. Tagert
chose death. Before he died, Tagert said there needs to be a public
outcry about ALS treatment and funding in British Columbia.
JOIN THE MOVEMENT TO #ENDALS
My ALS advocacy began, and still continues, on Twitter (@GregGowe),
where I share my journey, re-post breaking news about ALS and call on our
politicians to act.
As noted above, in February 2020, I helped found ALS Action Canada
(<www.alsactioncanada.org>), a patient-led organization of families with
Together, we are fighting for faster approvals and full coverage for ALS
treatments, increased federal and provincial government investment in
research and increased access to clinical trials.
There are many ways you can help us.
You can amplify our voices and press our governments to do better by following
and sharing our posts on Twitter (@ALSaction), Instagram (@ALS
action) and Facebook (@ALSActionCanada). Use the hashtag #EndALS.
You can e-mail your political representatives directly. All they need to
hear is that:
1. improving ALS treatment options, care and research is an issue
that you care about; and
2. this is a time of unprecedented hope for people with ALS, but we
need strong and urgent action from the federal and provincial governments
to turn this hope into a reality.
You can donate to our campaign,4 which is helping to raise $2.5 million
to create a proper ALS clinic in British Columbia with a full-time clinician