ALS Canada’s work is empowered by community. Discover how, in 2023, our efforts to support the ALS community ensured that people affected by ALS received the highest standard of care possible, and helped loved ones pursue their education goals.
It takes a community: Supporting people with ALS
Living with ALS can have many challenges, but with the support of the community, people living with the disease can navigate their journey with greater ease. ALS Canada’s Community Leads (CLs) in Ontario play an important role by offering individualized support to people diagnosed with ALS and their circle of support, which can include family members and health care professionals.
“Our support is individualized from person to person based on the progression of the disease, symptoms, and resources and supports are available in their community,” says Kim Barry, Vice-President of Community Services at ALS Canada. “There’s no waitlist; when someone is diagnosed, they are referred to our Community Leads, who are specialized in supporting someone living with ALS. They are there to help answer questions, support symptom management, and evaluate and facilitate the medical equipment needed now and in the future.”
ALS affects more than the person living with the disease. It’s common for a spouse or child to take on the role of primary caregiver, who will also have questions of their own about how to best assist their family member. In addition to providing information and resources to the caregiver, it’s not uncommon for a CL to support at least six additional people within a person’s care network who will have a role to aid in some way.
Navigating ALS becomes significantly less daunting for people affected by the disease, especially when they have access to someone who has been through the journey. This proactive approach not only offers a lifeline but also opens up an opportunity to maintain an important level of quality of life, safety, and independence, bringing a sense of relief and comfort.
“Although an ALS diagnosis can be devastating, it’s important to know that there is still life to enjoy,” says Kim. An example Kim shares of a recent client experience, “When John was diagnosed, that same day we were connected and scheduled a time to meet with him to discuss his initial questions. In the following weeks, the Community Lead worked closely with him and his wife to determine the care they wanted and when they wanted it. ALS is different for everyone; each day can bring a new complexity that can be easily managed with support, whether transitioning to a new mobility device, assistance with paperwork for transportation, or a referral to an allied health professional in the community. Ultimately, it’s about providing help and support, so the family can stay together at home.”
Giving back for a brighter future: recognizing resilience with the ALS Canada Kevin Daly Bursary
No one better understands the adversities while navigating a loved one’s ALS diagnosis than the ALS community themselves. The profound impact of the disease creates hurdles when thinking about achieving goals and aspirations created prior to a diagnosis. Life with ALS is different for everyone, but the mark it makes on each person drives a sense of compassion and desire to support others in the community.
In 2023, in partnership with the friends and colleagues of ALS community member Kevin Daly, ALS Canada sought to support young people navigating the impact of ALS. In celebration of Kevin, the ALS Canada Kevin Daly Bursary was created – inspired by his courage and dedication to other ALS families. The $2,500 bursary is awarded annually to post-secondary students across Canada whose lives have been touched by ALS. “Empowering students affected by ALS with this bursary not only eases their financial burdens but also sends a powerful message of a community connected and an understanding of the realities children face when a family has been impacted by ALS,” says Tammy Moore, CEO, ALS Canada.
The 2023 ALS Canada Kevin Daly Bursary was awarded to three students across Canada – Catherine Brassard, Daniella D’Amici, and Sarah Jacob – providing dual-purpose support through financial relief and community connection. “Day to day, it can be stressful, so having an external form of security makes a huge difference to me,” says D’Amici. “As well as connecting with the ALS Canada team and having them understand what I’m experiencing – that has added a sense of community that has been really special.”
“Receiving this bursary represents a source of comfort in a particularly difficult period, as it eases an emotional and financial burden. Having proof that my difficulties are recognized and supported encourages me to cultivate my resilience,” Brassard says. Supporting young adults navigating not only their goals for further education but also the harsh reality of ALS is critical to the future of ALS. ALS Canada and the Daly family congratulate the 2023 recipients for their resilience and academic dedication and look forward to supporting more students in the years to come.