My Life with ALS:  Stories from the Front Lines

People living with ALS face a difficult journey. It is with strength and courage that people with ALS battle this devastating disease. It is with strength and courage that family and friends of people living with ALS persevere and support their loved ones. It is this strength and courage that allows people affected by ALS to maintain hope.

For every person with ALS, there is a story to tell. These are the stories from the front lines.

If you’re a Canadian living with ALS or affected by ALS and would like to submit your story to be posted on our web site, please email it to Rebecca Grima, Director of Communications and Marketing at     

*Stories must be less than 3000 words and may be edited for spelling, grammar or content. Please refrain from using profanity. ALS Canada staff will not post stories deemed inappropriate or offensive for use on the web site.

Read. Be inspired. Share.

Bob Reid
Bob Reid shares his story about his brother in law Marc Valiani 
» Click here to read Bob's story.

Alec Muir
Alec was just five years old when his mother was diagnosed with ALS in 1991. As a child, he learned to cope with the diagnosis and her prognosis of two to five years. His family later learned that his mom had a slow progressing form of ALS, which has led to her 20-year-plus battle with ALS.
» Click here to read about Alec’s life growing up with ALS in his family.

Ross Fattori
I never had a heart-to-heart with my Dad - I am 33 years old and have never told my father that I love him. I’d wanted to - many times; especially since he was diagnosed with amyotrophic lateral sclerosis (ALS), a fatal illness of the nervous system, more commonly known as Lou Gehrig’s disease.
» Click here to read Ross's story

Kinga Njilas
Kinga was 21 years old when her mother, Erika Njilas-Lincmajer, was diagnosed with ALS on January 19, 2006.
» Click here to read Kinga's moving story of what her life was like living with ALS in her family.

Julie Brown Smida
Julie and her family are no strangers to ALS. Since 1940, four of her family members have battled this devastating disease - the latest being her mother, Beverley Brown.
» Click here to read about Julie's experience living with ALS.

Patricia Van Loan
Patricia Van Loan was diagnosed with ALS in November 1999. Her story is a speech delivered at the ALS Society of Canada's second biennial symposium, Unmasking ALS, in October, 2004. She lost her battle with ALS in 2007, but the story of her experience lives on.
» Click here to read about Patricia's journey with ALS.

William Weir
William Weir first noticed his symptoms of ALS in August 1999. He delivered this moving speech at the ALS Society of Canada's second biennial symposium, Unmasking ALS, in October, 2004. William is a former board member of the ALS Society of Toronto. He lost his battle with ALS in 2007.
» Click here to read William's take on what it is like living with ALS.

Virginie Bijon
Virginie Bijon was officially diagnosed with ALS in the summer of 2008, after a year of experiencing symptoms and going for tests. Her story was originally published as an article by The Globe and Mail on November 4, 2009. Virginie Bijon died Nov. 15, 2009.
» Click here to read about Virginie's life with ALS.

Larry and Joanne
Larry and Joanne were married in the summer of 1998, just beginning their life together. It was only six months later that they received the news that would forever change their lives. Larry, at the age of 36, was diagnosed with ALS. After battling ALS for seven years, Larry passed away on October 24, 2006, at the age of 44.
» Click here to read Larry and Joanne's story about living with ALS.