It wasn’t until her own diagnosis that Jackie learned ALS can be passed on through generations. Jackie Pasch, 55, was diagnosed with familial ALS almost a year ago. Shortly after, she lost the use of her left arm and developed difficulty breathing necessitating the use of a BiPAP machine at night to help her breathe […]
Walking to end ALS when ALS runs in the family
Published in Stories, Walk To End ALS on September 5, 2019
Tags: 2019-personal-stories, ALS, als stories, caregiving, community engagement, families with ALS, living with ALS, motor neuron disease, walk to end als
From ice bucket to bucket list: how Margot is coping with ALS
Published in Research, Stories on August 15, 2019
Tags: 2019-personal-stories, ALS Canada Research Program, ALS research, als stories, Donate to ALS, Every August, Every August Until A Cure, find a cure for ALS, funding als research, fundraising, Ice Bucket Challenge, living with ALS, motor neuron disease
Margot Algie heard about the ALS Ice Bucket Challenge in 2014 through friends and had no idea that only one year later, she would be diagnosed with the disease. Since then, she has come to understand firsthand the importance of maintaining the momentum of the viral social media phenomenon that resulted in a $21.5M investment […]
Leading Canadian ALS researcher stresses “time is of the essence”
Published in Research, Stories on August 9, 2019
Tags: 2019-personal-stories, ALS Canada Research Program, als cure, ALS research, Donate to ALS, Every August, find a cure for ALS, funding als research, fundraising, genetic research, motor neuron disease, research
“When you start researching ALS, it becomes a life mission,” says Dr. Janice Robertson, a prominent figure in the ALS research community in Canada and abroad. Dr. Robertson is studying variations within the brain and spinal cord of people living with ALS using two powerful new technologies that allow researchers to examine the nuclei of […]
No time to lose: ALS Canada volunteer and fundraiser sees urgent need for change
Published in Research, Stories, Volunteers on August 2, 2019
Tags: 2019-personal-stories, ALS Canada Research Program, als cure, ALS research, caregiving, Donate to ALS, Every August, Every August Until A Cure, fundraising, Ice Bucket Challenge, living with ALS, motor neuron disease
Beth Robertson’s husband, Tim, lived courageously with ALS for 12 years. He was sustained by the loving presence of his wife, Beth, his three children, and a large network of family and friends. Beth says she would do it all over again for Tim, but she admits ALS is a terrible burden for everyone it […]
Walking in memory fuels hope and strengthens community
Published in Events, Walk To End ALS on June 18, 2019
Tags: ALS researching, find a cure for ALS, finding a cure for als, funding als research, how to live with als, living with ALS, motor neuron disease
Lise Michaud’s brother, Eddy Lefrançois, made every day count. He lived nearly three decades with ALS, proudly defying the odds and outliving his “expiry date” (EXP: 04.97) which he tattooed on the inside of his forearm as a reminder to live with passion and purpose. Eddy’s personal motto – “Let’s Roll” – always kept him […]
Offsetting the loneliness and isolation of an ALS diagnosis with love and support
Published in Events, Walk To End ALS on May 23, 2019
Tags: 2019-personal-stories, ALS, als cure, als research is important, als research matters, Amyotrophic lateral sclerosis, Amyotrophic lateral sclerosis cure, motor neuron disease, treating als, walk to end als
For the past 40 years, Dale Hodgins has been saving lives as a paramedic and volunteer firefighter in Kingston, Ontario. In December 2018, he was diagnosed with ALS – a disease he was already familiar with through his work. As far back as the 80s and 90s, Dale remembers driving people living with ALS home […]
Positive and pragmatic – an approach for one family facing the realities of ALS
Published in Events, Walk To End ALS on May 15, 2019
Tags: 2019-personal-stories, ALS, als cure, als research is important, als research matters, Amyotrophic lateral sclerosis, Amyotrophic lateral sclerosis cure, finding a cure for als, finding a cure for motor neurone disease, motor neuron disease, motor neurone disease cure, treating als, walk to end als
According to Kevin, there’s one word that sums up ALS: a thief. “ALS is a thief – and a remorseless one at that,” he explains in writing. Now that he can no longer speak, he uses eye gaze technology to type messages with his eyes – his only method of communicating. “The sooner we can arrest […]