Fresh ideas for awareness and fundraising

Haven’t yet decided how you’re going to do the Walk to End ALS in your own way on Sunday, June 21? You need not look further than the Ice Bucket Challenge to know that the ALS community is creative and resilient, so they’ve got you covered!

Here are just a few innovative ways our community is encouraging others to raise awareness and funds this month and year-round. Feel free to make one of these challenges your own, or take to social media to let us know what you’re doing – be sure to tag @ALSCanada and #WalktoEndALS!

Still Life Challenge

In his recently-published memoir Still Life, Dr. Jeff Sutherland recounts how he and his family have navigated grief, hope, resilience and love while enduring significant personal losses, including his ALS diagnosis 13 years ago. To help others understand his present day-to-day reality – unable to move or speak, and reliant on his eyes to communicate every thought or request – he challenges everyone to do something he calls the Still Life Challenge.

“Undertake it with a responsible companion and an empty bladder,” Dr. Sutherland says, and he isn’t joking. The challenge involves being duct-taped to a chair for an hour. To communicate, you spell out every word by selecting individual letters with the blink of an eye as your companion recites the alphabet aloud. At the end of the hour, describe how you felt using five words.

“This challenge will give you a glimpse of the physical restrictions of ALS but nothing except the disease itself can give you a full appreciation of the losses associated with it,” says Dr. Sutherland. Read his instructions for the Still Life Challenge.

Burpee Challenge

The dreaded burpee is a staple in many fitness programs, and as Combat Engineer and Combat Diver with the Canadian Armed Forces, Deane Gorsline is no stranger to the full-body exercise. Since being diagnosed with ALS in late 2018, he’s lost strength and mobility in his arms, making the exercise that much more difficult to do.

That hasn’t deterred the 31-year-old, though – he recently started his own burpee challenge, asking people to do as many burpees as they can in one minute and making a donation to ALS Canada, tagging #ALSBurpeeChallenge when they post the video on social media.

The challenge is already gaining traction within the military community, and Deane is hoping it will tip into the mainstream. A passionate ALS advocate, especially when it comes to the lengthy timelines associated with accessing new therapies, Deane is harnessing his military training and love of physical pursuits to inspire others to take action.


ICEme2 End ALS

Diagnosed with ALS last year at the age of 51, Charmaine Loverin draws her inspiration from the original fundraising awareness and sensation of 2014, the Ice Bucket Challenge. Called ICEme2 End ALS, her challenge involves filling a tub or barrel with cold water and ice, sitting in it for two minutes straight, and capturing the whole thing on video, posting it to social media using the hashtag #iceme2endals.

“If athletes can sit in an ice bath for 5, 10 or 20 minutes, then two minutes is a breeze!” says Charmaine, who started the challenge at the beginning of 2020 by taking the plunge herself. “It may have taken me more than a minute to get in, but I did it!” she laughs.

Charmaine hopes to raise $2 million by the end of the year and has a fundraising page set up where people can donate to ALS Canada.

Please be safe! If you decide to take on any personal fundraising initiatives, you are solely responsible for your safety and voluntarily assume any risks associated with your activity.

Posted in: Events, Walk To End ALS