A Duty to help

ALS shatters dreams no matter when it strikes. For Deane Gorsline, 31, and his wife, Danielle, living with ALS means letting go of a lifetime of dreams. Focusing on the present helps them stay positive, whether it’s enjoying precious time with their new puppy, Trigger, or supporting the ALS community they belong to by joining the virtual Walk to End ALS.

A Combat Engineer and a Combat Diver with the Canadian Armed Forces, Deane says that the will to live and determination to keep moving forward have been drilled into him. He’s learned to take one day at a time to avoid dwelling too much on things he can’t control.

Although his upper body and his speech have been greatly affected since his ALS diagnosis in 2018, Deane still has use of his legs, and for now, that means he can still get outside for walks and other activities. Given his love of physical pursuits, he started a burpee challenge to support his fundraising for the Walk to End ALS and has already seen a lot of uptake from the military community.

Deane is also taking the opportunity to lobby government for shorter drug approval timelines so that promising new therapies can become available to people with ALS more quickly. “We’re planning a social media streamed event in front of Parliament, with a group of four supporters and myself. The plan is to be out there for 1,700 minutes which represents the approximate number of ALS patients who died between Health Canada approving Radicava, a therapy that has been shown to slow disease progression in some, and the 574 day wait for the first province to approve it for coverage,” says Deane.

Deane says he’s excited about being part of the ALS cause, although initially, he felt some hesitation about becoming involved. “When I thought about ALS from the 30,000-foot view, on the scale of world problems, like the civil wars of Syria and Yemen or the global pandemic, it seemed there were bigger issues at stake for the globe,” he explains, “but as I came to accept my situation and understand more about the needs of people with ALS, my thinking changed.”

The more Deane learned about the needs of Canadians with ALS, the more he felt it was his duty to help out. He became aware of the financial strain many families were facing, and is tremendously grateful that he and Danielle are blessed with the tremendous support of the Canadian Armed Forces, who have covered all of the expenses necessary to help maintain his mobility for as long as possible.

“I’m privileged,” he says. “Working for the military gives me a built-in support system and money to cover costs like remote-controlled doors that help me stay independent now that I’ve lost control in my hands.” Deane recognizes that most ALS patients receive limited equipment support from provincial health plans, and hospital beds on loan from ALS Canada can make “a world of difference for people without CAF support,” says Deane.

There is another important outcome of Deane’s involvement with ALS Canada – he says he has found a strong sense of community and belonging. “As time has passed, I’ve felt more and more compelled to take ownership of the problems in my community right there in front of me and to work towards a solution,” he explains.

Deane sums up his approach like this: “I am my brother’s keeper,” he explains. He sees his support, at a time when the health charity sector is reporting more than a 50% reduction in donation revenues, as his duty. The annual Walk to End ALS connects people and builds community. It also raises much needed funding so ALS Canada can continue investing in cutting-edge ALS research and, with a role in Ontario similar to that of other ALS Societies in each province, provide critical support for people living with ALS, who fall within the Public Health Agency of Canada’s criteria for a vulnerable population.

People in the ALS community are used to adapting to change. They face new hurdles every day. This year’s virtual Walk to End ALS shines a spotlight once again on this remarkable community’s resilience in the face of change and uncertainty.

The Walk to End ALS is the largest volunteer-led fundraiser for ALS Societies across Canada. Your fundraising efforts and generous donations support the best ALS research in Canada and enable ALS Societies to provide community-based support to people and families living with the disease. In 2020, the Walk is going virtual for the first time ever! Register and start fundraising today at https://walktoendals.ca/