Category: Events

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 76^th 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.

Jess Gustafson says she will never forget the first time she met Lianne, the ALS Canada Regional Manager in her area. Lianne came and sat with Jess and her husband, Alan, on their front porch to talk to them about what they could expect following the shocking news confirming Alan’s ALS diagnosis. Lianne provided informed and direct answers to their questions. “Lianne was the first person we talked to after the diagnosis who was so practical and helpful and compassionate,” says Jess. “You don’t necessarily expect that kind of follow-up when you have a disease that has no treatment and no cure. You can end up like an orphan in the healthcare system, so people like her are really stepping in in an important way.”

During June Awareness Month, Jess sees a unique opportunity to draw attention to the important gaps in the healthcare system filled by ALS Canada. “There are a lot of needs that you would be surprised to learn are not covered by the provincial healthcare system or corporate insurance plans,” says Jess. She points to a huge need for the kind of equipment that ALS Canada lends out as well as help they provide navigating the system to access supports like in-home care. “We were able to keep Alan at home with his baby and his wife living as comfortably as possible. The support being provided by ALS Canada is literally helping to keep families together with the best possible quality of life in the face of such a devastating illness,” says Jess. She considers this one of the most compelling reasons to donate and one of the main reasons she is so grateful for the help she received.

This month, Jess also wants to let people know they are not alone. “It’s important for me to share that message,” says Jess. “There were many nights when I went upstairs after putting Alan to bed and caring for our baby, when I would have two minutes to myself and I would look up at the stars and feel so desperately alone. I think about people who are in the situation we were in who are feeling isolated and feeling in pain and I want them to know that they are not alone. It’s really good to hear when you are going through it that there are other people who have been there and that they’ve come out the other end.”

Today, Jess is busy working part-time from home, looking after Harvey, and carrying on in Alan’s footsteps. While Alan was living with ALS, he volunteered to raise awareness during June Awareness Month by participating in activities such as raising the ALS Canada flag at City Hall in Ottawa, giving speeches and interviews, and visiting public schools to talk about ALS. “He used the very limited energy he had to try to get momentum and get the word out about ALS so I want to continue that work,” says Jess.

Jess is candid about the process required to bring her to the point where she now feels emotionally ready to jump into supporting the ALS cause in spite of – or perhaps because – the disease took so much from her. Over time, she has been able to conquer the fear that this chapter in Alan’s life would shape the way she remembered him even though Alan himself was never defined by his disease. She is able to separate that time in their lives, honour it, and still focus on all of the wonderful qualities about Alan and the happy memories she cherishes from before his diagnosis.

Recognizing the urgent need for action inspires Jess to give back, even after all the giving she has done to come this far. In fact, it seems the love and caring and the hope she has sustained have opened her to the possibility of re-engaging with the cause in a way that keeps Alan’s memory alive with the utmost grace and dignity. She hopes others like her will also be open to give again to help families living with ALS today and to pave the way towards a future without ALS.

It is difficult to stay positive in the face of an ALS diagnosis. Jess Gustafson says she and her husband, Alan, found hope and courage by supporting each other with a love that deepened over the course of Alan’s illness. She was also sustained by the outpouring of support offered by their wide circle of friends and family. Even so, Jess remembers feeling despair as Alan’s symptoms progressed.

Although physical pain is not one of the typical symptoms of ALS, the challenges Alan faced were compounded by neurological pain. “As anyone who lives with chronic pain can tell you,” says Jess, “it really affects your mental state.” This burden seemed like one more cruel twist of fate on top of the fact that Alan was a new father facing a particularly aggressive form of ALS. Jess describes Alan as a very affectionate man. To watch as ALS took away his ability to hug his wife and cuddle his son was devastating. So was Alan’s increasing vulnerability. In order to avoid causing him pain, everyone had to be extremely gentle touching him when performing tasks like strapping him into his wheelchair or getting him into a car because he was so sensitive to touch.

Managing the pain was a perpetual challenge, but Jess and Alan were fortunate to receive excellent medical care. Through their connection with ALS Canada, they learned about a clinical trial in Montreal focused on slowing the progression of the disease, particularly with respect to lung function. At the same time Alan was participating in the trial, he was being closely monitored for his pain symptoms. Jess credits their neurologist with being instrumental in helping Alan keep the pain under control with a number of different drug therapies.

Not surprisingly, Jess is adamant about the importance of clinical trials like the one Alan participated in. She sees the potential for immediate benefit and for long-term gain. “Research and innovation happen in a context where you’re dealing with people who have the disease and you’re helping them manage their symptoms. You’re documenting their symptoms. That kind of research will help someone down the line to be more comfortable.”

Jess acknowledges, however, that even with the best and the brightest scientific researchers working to better understand the disease, progress never moves fast enough for the people living with ALS today. ALS is a complex disease. There is so much work to be done. And yet, leading scientific researchers agree that the future looks more hopeful today than ever before. As Jess points out, “When you put resources into research, really amazing things happen and cures for diseases are found every day. We could be right around the corner from a cure for ALS. We just need to keep pushing.”

Jess is determined to make a difference. One of the ways she is raising awareness this June Awareness Month is by using her voice to tell her story and urging others to support research funding. She recognizes the challenge in building a case for support when the population of Canadians living with ALS is small relative to other diseases. Part of the reason for this, of course, is that most people with ALS only live for two to five years. She argues that investment in ALS research would not only benefit the ALS community; it would inevitably add to our greater understanding of the brain and the nervous system, and most certainly, to our understanding of other related motor neuron diseases. Numbers aside, the horrible nature of this disease is enough to warrant an outcry to end the suffering. This month, Jess is speaking out about the importance of research funding so that everyone touched by ALS can have hope that one day there will be a cure and that an ALS diagnosis will no longer be a death sentence.

Caring for a loved one with ALS is a challenging task that requires time, energy and emotional resilience, and caregivers give so much of themselves — time and time again. Even after a loved one passes away, caregivers continue to give in many ways. And for everything that ALS takes, love is the one thing it cannot. Follow along in this three-part series as we share the story of one caregiver who has championed the ALS cause after the loss of her husband, Alan.

Even as a young toddler, Harvey reminds his mom, Jess, so much of his dad. It’s one of the ways Alan Gustafson lives on. “Alan is very present in our life. He’s part of us,” says Jess. “His art reminds us of him every day. But there’s also an emotional and spiritual connection with him that I continue to nurture.”

Around the time Harvey was born, the young family was stunned to learn that Alan Gustafson had ALS. He was only 38 years old and delighting in the thought of becoming a dad for the first time. He was also a celebrated welder and metal fabricator known in Ottawa for his public installations. Losing the use of his body meant losing the ability to express himself through his craft which for Alan was a vital part of his identity. As the disease progressed, he refused to give in without exploring other outlets for artistic expression that would continue to feed his creative impulse. At the suggestion of an artist friend, he configured a system to allow him to paint. With the help of an assistant and an adapted wheelchair fitted with a long bar to hold the paint, Alan created large canvases on the floor of his workshop.

Sometimes, ALS progresses quite slowly, but in 80% of cases, people are given a window of two to five years. Alan’s condition deteriorated at an alarming rate. It was only a matter of weeks following his diagnosis before he was confined to a wheelchair without the use of his hands or arms. Within less than a year and half, ALS had taken Alan’s life. Jess remembers when “every day brought a new symptom. It was impossible for us just to catch our breath,” she says. It was harrowing to see this “gentle giant” lose all his physical strength. Alan was so strong he once brought a washing machine into the house and carried it down the stairs by himself. The loss of independence was very difficult on both Jess and Alan.

“He could make anything happen and suddenly we were in a situation where we were both completely at the mercy of the people around us to help,” recalls Jess.

Throughout the time she cared for Alan, Jess reacted against a feeling of helplessness accepting his ALS diagnosis by giving of herself to the many needs of the new reality they were facing as a family: looking after a new baby and her husband at the same time, attending to Alan’s personal care including feeding and bathing him, coordinating extra help and medical appointments, overseeing his pain management at home, and acting as his interpreter when his speech became difficult for others to decipher.

Now, a year after Alan’s death, Jess is once again giving of herself – sharing her story to raise awareness and help create a brighter future for other families who will face an ALS diagnosis. She is outspoken and passionate about the fact that ALS must be stopped. “I don’t think we should accept that this level of suffering is something that can go on. It feels like torture to watch helplessly as everything is peeled away,” she argues. “ALS is so insidious. People are forever changed by their exposure to this disease. It’s on us, the survivors, to champion and advocate and raise awareness.”

Although there are relatively few Canadians diagnosed with ALS in comparison to other potentially fatal diseases that garner much greater financial support and exposure, Jess makes the point that the ripple effect on families and communities is huge, and that ALS can strike anyone at any time. She sees an enormous amount of work that needs to be done to support families living with ALS and to prepare for a future without ALS. In her words, “you can’t sugar-coat it.” ALS must be stopped.