In just a few short weeks, Chris Clarke will embark on one of the most challenging physical journeys he’s encountered by trekking Mount Kilimanjaro in Tanzania, but it’s nothing as tough as the journey he and his family faced with his dad’s ALS diagnosis.
“Our world changed quite a lot,” says Chris, 28-years-old, whose dad, Aussie Clarke, was diagnosed with ALS in July 2021. “Things moved really quickly. Within the course of a few months of his diagnosis he had lost the ability to move independently without aides and then a few months later he had vocal changes and ultimately lost his ability to speak.”
Aussie passed away on September 26, 2022 – just four days after his 76th birthday.
“He was such a warm and fun-loving guy,” says Chris. Aussie was a psychiatric nurse in the community he lived in in Edmonton, Alberta. Chris explains that his dad’s heart was so big that it wasn’t uncommon for him to buy groceries and stock the cupboards of patients he saw within the inner-city community who he recognized needed support. He even went so far as to bring a newcomer family into their home to help celebrate the holidays one year.
It’s clear that this giving spirit left an impression on Chris, as he has found purpose in the passing of his father to help fundraise for the ALS cause and support other families experiencing a diagnosis.
“Seeing my dad’s journey – especially in the early stages, we knew it wasn’t going to be a walk in the park from the very start – I just want to be able to make a contribution in some way so that other families don’t have to go through something like this,” he says. “If I wasn’t going to be able to help him, I wanted to be able to help others in the future – not only within Alberta but more broadly as well.”
This sparked his desire to take on the 6-day trek of climbing Mount Kilimanjaro – the highest peak in Africa – and turn it into a fundraiser. Chris, along with three of his close friends, will begin their journey by travelling to Tanzania on January 28 and start the climb on January 31. The tentative schedule has them summiting on February 4 and descending the next day – hiking a whopping 15-17 km on the last day of the expedition.
Chris has an interest in high-altitude mountaineering and one day hopes to climb all Seven Summits. This first one will be special as he stays motivated with thoughts of his father and the ability to build awareness and raise important funds for the disease that took him so quickly.
Chris’s mom, sister, brother, extended family, and home care supports from within the community, helped with his dad’s care throughout his diagnosis. As a family medicine resident completing his residency training in Victoria, B.C., Chris flew back and forth often to help but he recognizes the incredible support the ALS Society of Alberta provided them with their Equipment Loan Program. The Program provided the family with access to a hospital bed, mechanical lift, and wheelchairs.
“There are so many gaps in the health care system,” he says. “The ALS Society of Alberta were amazing. I had no idea they existed or what their role was in the community prior to our family’s journey. Being able to access their client support services meant that we could maintain his care at home for as long as possible which, in terms of his mental health, helped quite a lot. My dad wanted to spend as much time at home as possible and the supports we had bought us meaningful, quality time at home, which was priceless.”
Chris’s fundraising efforts will also go to supporting ALS Canada’s Research Program, the only national dedicated source of funding for ALS research.
“Looking forward, there are clinical trials and studies looking to develop therapeutics, treatments and alike for ALS, but it’s still quite limited and I think probably in its infancy,” he says. “Looking down the road I think this is still going to be quite a long journey for people living with ALS, but in terms of donating to the ALS Canada Research Program, it’s our hope that we can help in some way in contributing to finding a cure.”
Chris and his group of friends taking part in the expedition are investing their own money in the trip itself so that all funds raised are donated directly to the cause. Their fundraising goal is $20,000 with funds raised supporting both the ALS Society of Alberta and the ALS Society of Canada. To learn more and donate to Chris’s “Climb for a Cure 2023” fundraiser visit his fundraising page.
To find out what support services are available in your province, visit our Support and Services webpage. The ALS Society of Canada invests in high-quality research, advocates for equitable, affordable, and timely access to proven therapies, and empowers Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS, similar to those services Chris accessed with the ALS Society of Alberta.