After years of searching for answers, Terry Loustel was diagnosed with ALS in 2022. In his own words, Terry shares his journey—from receiving his diagnosis to navigating life with ALS—and why he has chosen to use his voice to advocate for the ALS community.

At 57, Shawn lives in a small town in British Columbia’s northern Okanagan. He enjoys the beauty of the region and remains focused on living life to the fullest, despite an ALS diagnosis that arrived after a long and uncertain journey.
Shawn first noticed something was wrong in May 2022 when he developed a weak pinch grip in his left hand. What followed was more than a year of appointments, referrals, tests, and alternative explanations.

Amanda Tam shares her perspective on living with ALS, the importance of accelerating research, and what keeps her moving forward. Through honesty, advocacy, and awareness, she is helping build understanding and community while ensuring the experiences of people living with ALS remain at the centre of conversations about care, research, and support.