Deane Gorsline walked for 28.3 hours during his Walk to End ALS event last month. (Facebook live event screenshot/Lakes District News)

Deane Gorsline walked for 28.3 hours during his Walk to End ALS event last month. (Facebook live event screenshot/Lakes District News)

ALS patient’s gritty all-night walk for awareness

Former Burns Lake resident walked for 28 hours in Ottawa

A former Burns Lake and Quesnel resident diagnosed with Amyotrophic Lateral Sclerosis (ALS), walked for 1,700 minutes in his walk to end ALS.

Deane Gorsline, 32 was diagnosed with ALS at the age of 29 and has since been battling the disease and raising his voice to bring hope to others suffering from this diagnosis. On June 19, Gorsline started his walk for 1,700 minutes, a total of 28.3 hours, in honour of roughly 1,700 who lost their lives to ALS due to the time it took between Health Canada to approve Edaravone, a drug for ALS and the first province to approve it for coverage. This delay of 574 days from approval of the drug to its actual coverage cost the lives of roughly 1,700.

Last year, Gorsline organized an ALS Burpee challenge and a walk to end ALS calling it “Deane’s walk to end ALS”.

“Grateful for the phenomenal support of all of my friends and family during this year’s #walktoendALS. I made it 13.7km this year compared to 43km and 192 burpees last year. Better start training for 2022!” wrote Gorsline on his social media.

READ MORE: ‘I want to come home, but there are no treatment options in B.C.,’ says man diagnosed with ALS

Gorsline’s 2021 Walk to End ALS coincided with the Global ALS Awareness Day on June 20 with the walk that started a day earlier, went on through the night. The walk started at Walter Baker Park in Kanata, Ontario and moved to Parliament Hill, before circling back to the park in Kanata.

Gorsline, who grew up in the small communities of Burns Lake and Quesnel, left to join the Royal Military College of Canada in 2007, where he studied civil engineering and trained to become a combat engineer officer. After getting diagnosed with the disease, Gorsline and his family have tried to get their hands on several treatment options, and Gorsline has even travelled to Korea on five occasions for three stem cell injections.

He however, would prefer treatment back home in British Columbia, an option that is not yet available in Canada. His fight has since been to try and get the government to pay attention to the problem of lack of treatment options for Canadians diagnosed with ALS.

Gorsline and his mother Barbara co-founded the patient-led ALS Action Canada group to push for improved and accelerated access to drug approvals in Canada. The walk was one of Gorsline’s ways to bring awareness over the disease and for calling upon the federal government to take a leadership role in expediting the approval time for promising new drug trials for ALS.