ALS Canada highlights the 2023 ALS Canada Kevin Daly Bursary recipients

Following her father’s ALS diagnosis in the summer of 2022, Daniella D’Amici – a 2023 ALS Canada Kevin Daly Bursary recipient – continues to demonstrate her resourcefulness and resilience in the face of adversity. Currently a biomedical engineering student at the University of British Columbia, Daniella always knew she wanted to pursue a career that blended her desire to problem-solve and do good. 

Designing medical devices through her studies has taken on a new meaning for Daniella as she experiences the unique needs and challenges of people who require equipment to support their daily lives. “A really big thing I hadn’t thought of before but was aware of is the accessibility of assistive devices. Seeing how my dad interacts with them and how custom-fit is such a priority has brought on a new perspective.”  

As she continues her academics with a new connection and hopes for the future of medical equipment and accessibility, she also shoulders the new role of caregiver alongside her mother and sister – navigating the mental impacts an ALS diagnosis can bring. “Being impacted by ALS can feel very isolating,” Daniella says. “Your strength is in your support network. I’ve had trouble asking for help sometimes, but I’ve quickly learned this is something that can’t rest on my shoulders. I would let others in similar situations know how to cherish everything with their families, and as terrible as this is, it will bring you closer together.” 

Supporting students by providing a sense of security to ease daily stresses and an opportunity to feel connected with the wider ALS community across Canada is crucial to what the ALS Canada Kevin Daly Bursary seeks to foster. To Daniella, receiving a bursary echoes this sentiment, “Day to day, it can be stressful, so having an external form of security makes a huge difference to me. The additional financial security has been overwhelming and very appreciated. 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.”

ALS Canada highlights the 2023 ALS Canada Kevin Daly Bursary recipients

A medical student at the Université de Sherbrooke, Catherine Brassard exhibits a steadfast determination and adherence to furthering her studies in the wake of her father’s ALS diagnosis in early 2023. Her interest in pursuing neurology in her studies was amplified as her family began navigating life with the disease.  

With her dad’s symptoms first being recognized in late 2022, the confirmation of an ALS diagnosis led Catherine to grasp an unimaginable life shift. “It’s something we always think happens to others but not to us – so I initially went through a period of shock following his diagnosis, and it took a while to absorb it all,” Catherine explains. “The most important thing for me was to make sense of everything happening. I thought of taking a break from medicine, but continuing to study and see patients helps me continue something that helps me make sense of everything.” 

For Catherine, being a recipient of a 2023 ALS Canada Kevin Daly Bursary means that the hurdles she faces as she navigates the impact of her father’s diagnosis are recognized. “Receiving the bursary helps bring a feeling of support. I don’t know anyone living with the same experience as me, and at my age, there aren’t many people I talk to frequently who have lived through it. So, the bursary represents a sense of support, knowing other people have had the same experience, and financial support aiding in the expenses a medical degree generates.” 

With a journey in medicine lying ahead and hopes that her future patients can find, in her toolbox, what is best for them in coping with grief, she currently continues to learn how to navigate her journey with ALS daily, “The way I see it, living with the impacts of ALS, is really to go day-by-day – something my family has been telling ourselves.” 

Deirdre O’Connor and her husband, Floyd, became ALS Canada donors 15 years ago. At the time, they had no personal connection to the cause, but they liked the fact that ALS Canada was a small, cost-effective charitable organization without a lot of overhead. Deirdre’s generosity extends to half a dozen or more organizations she supports on a regular basis, but with ALS Canada, she has deepened her commitment beyond annual giving by making a bequest in her will. In her words, “It’s a way to pay it forward, to leave a lasting legacy that will benefit people with ALS in the future.”

When official news of Floyd’s ALS diagnosis came in 2012, the couple, both retired at the time, turned to ALS Canada for help. “I never knew we would end up depending on ALS Canada for so much support,” says Deirdre. “Floyd’s greatest wish was to remain at home, and I realized I would never be able to give him the kind of care he needed on my own.”

As Floyd’s condition worsened, Deirdre relied on her ALS Canada regional manager, Sarah, to help acquire different types of equipment on loan such as walkers and a wheelchair for mobility, a bath chair to help with bathing, and a special bed to make sleeping easier. During the two years Floyd lived with ALS, Sarah became Deirdre’s first point of contact when any new problem cropped up. “I knew I could just pick up the phone and ask a question and there would be someone there to help me,” she recalls. “That’s what mattered most.”

The kind of support ALS Canada Regional Managers give when it is most needed often becomes a lifeline for people struggling as their loved ones grow weaker by the day. In Deirdre’s case, the practical and emotional support she received from Sarah directly, and through attending monthly support meetings with other family members struggling with the same challenges, meant she was not alone.

When Deirdre explains why she decided to make a legacy gift to ensure the future of ALS Canada, she speaks from the perspective of someone who knows first-hand what emotional support and practical help can do to ease the burden of living with ALS. In turn, we are extremely fortunate to have generous and caring donors like Deirdre O’Connor!

Did you know?

In Canada, May is “leave a legacy” month, which encourages people to make a donation through their will or another planned giving vehicle to a charity or cause that is meaningful to them. A planned gift to ALS Canada is a way to extend your compassion to people and families who will face an ALS diagnosis in the future, and to demonstrate your shared hope for the day where ALS will be a treatable, not terminal disease.

We are committed to working with you, your family and your financial advisor to ensure your philanthropic and financial goals are met. If you have questions about making a donation to ALS Canada in your will, please contact donations@als.ca or 1-800-267-4257.