Hi, my name is Lorie Jacobsen, and I live with ALS. My family includes my spouse Lyle, my two daughters, my son-in-law, and my beautiful mother. I spent my life raising my children while working and volunteering across the nonprofit sector. From PTA in Winnipeg to gymnastics and various city boards in Cold Lake, I’ve always been a proud, and vocal, advocate for the communities I’ve called home.

In June 2023, I started to notice changes in my voice. My family doctor, Dr. Brandon Steed, took my concerns seriously, even when others couldn’t hear what I was hearing. Thanks to his care and persistence, I was diagnosed with bulbar-onset ALS on February 4, 2024, at South Health Campus in Calgary. I told myself: Challenge accepted.

Since then, ALS has taken my voice, but it hasn’t taken my drive to help others. While I’m currently not eligible for any treatments or clinical trials, I’m doing everything I can to raise awareness and funds for a future where people living with ALS have options. A future where they feel heard, seen, and supported. A future where ALS is not a life-ending diagnosis, and doesn’t steal a person’s ability to connect.

One thing ALS hasn’t touched is my love of travel. This summer, Lyle and I are heading out on the trip of a lifetime: camping our way across Norway with our daughters! I can’t wait to spend our days soaking in the mountains, coastlines, and creating memories of meaningful moments together. It’s a dream I’ve held close, and I’m incredibly grateful to still be able to explore the world, seek adventure, and spend time with the people I love most.

The ALS Society of Alberta has been an incredible source of strength and support. From equipment to resources, they’ve helped me meet and navigate this challenge head-on, with dignity and courage. I’m also grateful for my compassionate coworkers at Service Canada in Lethbridge, who continue to stand beside me. I'm still working full-time and I treasure each day I get to spend meaningfully with my family and my colleagues. They are my community.

ALS is not something anyone can face alone. But through walks like this, we’re building something powerful: a community rooted in hope, action, and care. I’m honoured to once again serve as the Lethbridge Walk Ambassador for 2025 and to walk alongside all Albertans affected by ALS.

Please join us on Saturday, September 6, 2025, at Henderson Lake - Horseshoe Pits. Together, let’s move one step closer to new treatments, and one day…a cure.

ALS may have taken my voice, but it has not taken my ability to speak up for others.

See you at the walk!