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
For Sarah Jacob, furthering her studies in neuroscience means more than just receiving a degree. Sarah, a master’s student at the University of Calgary, began studying neuroscience during her undergrad, having had a general interest in the subject. Following her mother’s ALS diagnosis in 2018, her passion for neuroscience intensified – specifically ALS research. “I want to be part of the ALS research community that is fighting to know more about the disease to find a cure,” she says.
As one of the three 2023 ALS Canada Kevin Daly Bursary recipients, Sarah’s time as a student is not only spent studying but also navigating her mother’s diagnosis and her new role as a caregiver. An ALS diagnosis impacts more than just the person receiving it – influencing the daily lives of friends and family and creating new realizations, values, and goals. “Ever since my mother was diagnosed with ALS, it has been the focus of my life,” Sarah explains. “It was very difficult to watch how fast she progressed with her disease. It has made me realize the importance of working towards finding a cure because of how much ALS takes away from the things you are able to do – which is why I became involved with research and studying ALS myself.”
A member of the ALS Club at the University of Alberta, Sarah strongly believes in raising awareness and educating others about the relentless disease. “There may be people that are touched by the realities of ALS so much they want to get involved with the ALS community, helping to further our efforts and advancements.” For her, sharing her story is her power. For her, it means a community connection – support from hearing you are not alone can provide relief from feelings of isolation. “Receiving this bursary is a great honour as I feel my story is heard, especially with everything going on with my mom.”
Through support from the ALS Canada Kevin Daly Bursary, we foster connection, recognize the challenges people face when a family member is impacted by ALS, and encourage their journey to further their education and become influential players in the work toward a future without ALS.
ALS Canada highlights the 2023 ALS Canada Kevin Daly Bursary recipients
Now is the time for change. More than 3,000 people and families throughout Canada continue to face the profound emotional, financial, and psychological impact of living with ALS. Their collective experience is core to every action we take and decision we make. And every person affected by this devastating disease is reason enough for our work to change the reality of ALS.
Our 2019 Annual Report to the Community, entitled For What Counts, shares the critical impact and progress made last year that is getting us closer to a future without ALS. Creating this reality unites the ALS community, and by working together we can support people and families affected by ALS, accelerate scientific discovery towards developing new treatments, and improve access to innovative therapies in a timely way.
Each day, we are driven by our goal of transforming what an ALS diagnosis means today and in the future. Our work is grounded in the three pillars of our strategic plan: people affected by ALS receive the best possible standard of care, have a better quality of life because of the treatments that are available, and are empowered to make informed decisions. Our supporters in 2019 advanced all of these areas – through their essential and generous contributions, they:
Helped nearly 1,000 Ontario families affected by ALS by enabling them to receive 2,800 pieces of equipment at no cost and benefit from 7,200 personal touchpoints with our Regional Managers (including nearly 1,500 in-person visits) to better navigate their journey with ALS; and supported the first-ever pilot ALS Caregiver Day in Toronto that provided family caregivers with a connection to others in the ALS community.
Enabled $1.4 million to be invested in leading-edge Canadian ALS research projects, which are fueling scientific discoveries and helping to maintain the momentum for ALS therapy development. In addition, furthered the infrastructure development of CAPTURE ALS, a national initiative to further understand ALS.
Made it possible for nearly 30 government meetings to take place between the ALS community and elected officials, with a focus on advocating for improved funding and policy changes, as well as access to therapies with thousands of Canadians taking part in a letter-writing campaign leading up to the 2019 federal election.
For What Counts: ALS Canada’s 2019 Annual Report
Read our 2019 Annual Report and learn more about how we’re working to change the reality of what it means to live with ALS.
*UPDATED January 2019 – Eddy passed away from ALS in early 2019. Until this death, he worked tirelessly to raise awareness of ALS and mobilize others to support the cause, using social media and his personal website, to connect with people near and far.
Imagine waking up and trying to turn on the lights, but you can’t lift your arms. How do you change the channel on the TV when your fingers don’t move? What would it be like to be unable to adjust the thermostat when you’re too cold because you’re living with a disease that has left you paralyzed? These are just a handful of the everyday challenges that someone affected by ALS will face at some point throughout their progression but today, we have technology that’s available to help break through some of these obstacles.
Voice-activated digital assistants such as the Amazon Echo and Google Home are becoming increasingly popular in homes around the world for their convenience and ease of use. But for someone living with ALS, these technologies can mean the difference between independence and relying on others to perform simple everyday tasks.
Using eye-gaze technology to control his Amazon Echo, Alexa, Eddy Lefrançois has regained the autonomy he lost when ALS took his mobility and speech. The last time Eddy was able to turn the lights on by himself was 17 years ago, and even then, he remembers doing it using his head or shoulder. Today, with the help of his assistive technologies, Eddy has written an article he hopes will help other people living with ALS reclaim the “small life privileges” that ALS takes away.
Eddy’s story
I am writing this article with my eyes, sitting comfortably in my power wheelchair as I watch the baseball game. My eye gaze technology helps me communicate on my own, using light and cameras to track my eye movements and turn them into clicks on my computer screen. For years I was unable to express myself because only certain people could understand my weak voice. Since receiving this technology, I no longer need someone to stand beside me to translate my body language, a sense of freedom I hadn’t experienced in a long time.
Recently, I connected my house to Alexa, a cloud-based voice service that, combined with my eye gaze, allows me to turn the lights on and off, control the thermostat and change the channels on my TV. Now, even though I have lost complete use of my hands and fingers, I can text my friends and family using Remote Phone Call and Call Center apps, both of which connect via Bluetooth to my eye gaze and Alexa. What’s more, an app called Vysor mirrors my cell phone on a computer screen, allowing me to use mobile apps.
Technology has even helped give me peace of mind during the night. In my bedroom, a baby monitor is connected to the internet so that my siblings who live a few blocks away can see and speak with me on their mobile devices in case of an emergency.
Over the past 26 years, I have learned to ignore when I am hot or cold. I have learned to accept missing my favourite TV shows and living in the dark, literally without lights on. Thanks to my new technologies, I am no longer forced to live against my will. ALS, you won’t have me that easy!
