ALS Research Update | October 2019

ALS Research Update, October 2019 Welcome to the October 2019 ALS Research update. This month, you’ll learn about the progress researchers have made in: transforming the way clinical trials are conducted; understanding the roles that the microbiome and protein clumping may play in ALS; and identifying the mechanisms by which different genes may contribute to […]

Walking to end ALS when ALS runs in the family

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 […]

From ice bucket to bucket list: how Margot is coping with ALS

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”

“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

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

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

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

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 […]