Understanding Neurological Conditions
How Self-Advocacy Helped Me Help Myself
Advocacy is key for overcoming barriers to finding and accessing the tools needed to make life with your conditions easier.
ince being diagnosed with epilepsy, I fought to get the right treatment to alleviate the symptoms of my condition. I pleaded with my doctor for a new neurologist, one who fully understood the nature of my epilepsy. My first two seizures were tonic-clonic seizures, characterized by a blackout and body convulsions, followed by confusion and grogginess. Many people
Tashon Daley
with epilepsy experience an aura beforehand. Mine hit me with a metallic taste in my mouth and a feeling of jamais vu. When my doctor introduced me to Epilepsy Toronto, they helped me learn the importance of self-advocacy and supported me in finding a new neurologist who better understood my needs. Through their educational sessions and workshops, I learned that
lethargy, disorientation, and blanking out could be related to my focal seizures. My new neurologist helped me find a new treatment that was right for me. This would not have happened if I had stayed silent rather than advocating for myself.
For more information, visit epilepsytoronto.org
Navigating ALS With Trusted Knowledge And Support
ALS Canada’s Canadian ALS Learning Institute program provides Canadians affected by ALS with access to experts to learn and ask questions.
In today’s digital age, living with amyotrophic lateral sclerosis (ALS) and having access to countless sources of information might seem helpful. However, it can become overwhelming to decipher the accuracy of the information, especially within the context of the global medical and research landscape.
ALS is a disease that progressively paralyzes people because the brain can no longer communicate with the muscles of the body, losing the ability to walk, talk, eat, swallow, and eventually breathe.
The devastating reality of ALS –with no cure, limited treatments, and an average life expectancy of just two to five years – has nearly 4,000 Canadians living with the disease and
their families seeking trusted resources and accurate information.
Empowering patients with reliable resources
To address this need, the ALS Society of Canada (ALS Canada) created the Canadian ALS Learning Institute (CALI), a free virtual program for Canadians affected by ALS. CALI provides an opportunity to learn and ask questions.
“CALI is designed to meet participants where they are in their journey, including people with ALS and caregivers,” says Umayangga Yogalingam, Manager, Knowledge Exchange and Community Information. “The program sessions aim to provide clear information to improve understanding of the ALS ecosystem.”
Participants gain knowledge and
resources to understand the disease, available treatments, clinical trials, research, and advocacy initiatives. This empowers them to make informed decisions, advocate for themselves, and influence stakeholders to ensure the community’s voice is part of the decision-making process.
“At times, living with ALS can feel isolating,” says Andrew Dundas, CALI graduate and ALS Canada Community Ambassador. “Being able to ask experts questions and connect with other people living with ALS made me feel less alone.”
By replacing fear and anxiety with knowledge and understanding, the CALI encourages the community to confidently access the care and supports needed to navigate this complex disease.
If you or someone you know has ALS, reach out. To learn more,
Justin Edmonstone
Andrew Dundas
CABHI Leads the Charge in Defying Dementia
The Centre for Aging + Brain Health Innovation (CABHI), powered by Baycrest, is driving the future of aging and dementia care through innovations that enhance the lives of older persons and their families.
Shusmita Rashid and Rhea Singer
Se p tember is World Alzheimer’s Month, a time to raise awareness about dementia, which affects over 55 million people globally and is expected to impact more than 150 million by 2030, including nearly a million Canadians. The Centre for Aging + Brain Health Innovation (CABHI), powered by Baycrest, leads the charge in defying dementia by advancing innovations that support dementia prevention, detection, treatment, and care. With 45 per cent of dementia cases potentially preventable, CABHI’s work is crucial in developing solutions that reduce dementia risk and improve the aging experience.
Shaping the future of aging and brain health
Gordon, a widower living alone in rural B.C., faces isolation — a key dementia risk factor. Tuktu (tuktu.ca), a support service platform, connects him with a local companion who shares his interests. In a Toronto seniors’ residence, Jane struggles to stay active — another modifiable risk factor. Motiview (motiview.ca), a video library paired with stationary bikes, keeps her moving while reminiscing about childhood trips. Working in a Halifax long-term care home, Angela grapples with balancing administrative tasks while caring for residents. Welbi (welbi.co), a platform integrating recreation programming with health records, saves Angela up to 25 hours each month, allowing more time for resident care. Tuktu, Motiview,
and Welbi are among over 400 solutions supported by CABHI — a trailblazing innovation catalyst advancing solutions for aging, brain health, and dementia.
policymakers, and industry leaders to co-design, test, and scale solutions for maximum impact. By engaging these diverse groups, CABHI combats stigma, influences policy change, and enhances the quality of life for those affected by dementia.
A comprehensive approach to innovation
At CABHI, we don’t just promote new innovations; we create the environments that are ready to sustain them.
– Dr. Allison Sekuler
Transforming ideas into real-world impact
Many promising solutions fail because they do not meet users’ needs, work as expected, or get adopted. CABHI ensures innovators understand user needs, refine solutions in real-world settings, and are positioned for success. Through its Community of Innovation and Leap platform, CABHI unites researchers, innovators, older persons, caregivers, healthcare organizations,
CABHI's unique and coordinated approach ensures solutions move through the innovation pipeline while creating environments that foster adoption. Programs like Spark provide funding, coaching, and end-user feedback to early-stage innovators.
The Mentorship, Capital, and Continuation (MC2) program supports more advanced innovators with commercialization, while the Discover and Adopt (D+A) program prepares organizations to implement new innovations effectively. Through partnerships, CABHI mobilizes critical knowledge and solutions to redefine the future of aging and brain health.
“At CABHI, we don’t just promote new innovations; we create the environments that are ready to sustain them,” says Dr. Allison Sekuler, President and Chief Scientist at CABHI and the Baycrest Academy for Research and Education. “By supporting innovators at every stage and working closely with end users, we ensure groundbreaking solutions make a profound impact on the lives of older persons and their families.”
Dr. Allison Sekuler, President and Chief Scientist at CABHI and the Baycrest Academy for Research and Education, and Brian Tan, Research Lead at Baycrest’s Kimel Family Centre for Brain Health and Wellness, showing Bev Shukyn, Leap member, how to use the Motiview, a CABHI-supported innovation. Photo: Eric Benchimol, 2024.
To learn more about how you can decrease your own dementia risk, listen to the Defy Dementia podcast at defydementia.org You can test your brain health for free at cogniciti.com Visit cabhi.com to become part of CABHI's Community of Innovation and join the charge in defying dementia.
This article was sponsored by CABHI
