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 […]

Coach Sunshine’s ‘never quit attitude’ can help change the future of ALS

At the rink where he has coached boys’ ice hockey for more than 10 years, Adam Welburn-Ross, 43, is fondly known as “Coach Sunshine.” He wears his positivity as a badge of honour and now that he is living with ALS, his disposition is helping everyone around him appreciate every precious moment of the day. […]

Finding inspiration from the small things makes a big difference

Brian Bower has always been passionate about sports. Above all, he is an ardent fisherman, known on occasion to snatch 15 minutes from his day for the joy of casting a line in one of the abundant waterways in and around Welland, where he lives. Brian also loves soccer, tennis, lacrosse, hockey and baseball. An […]

It’s about time to change the reality of ALS

ALS is always about time. How much time do I have? How much time until I can’t hug my children? How much time until I can no longer walk, or eat, or breathe? It’s about time we change that. It’s about time we stop ALS from shattering dreams, from devastating lives. It’s about time to […]

Reinforcing spiritual values through community connection

Since receiving his ALS diagnosis in February 2018, Mark Ianniello’s life has changed in profound ways. He is a 49-year-old father to three teenagers and can no longer work to help support his family. ALS has affected his speech and his mobility. Mark admits to having ups and downs. Despite the challenges, he says ALS […]

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 […]

Augie’s Quest and ALS Research in Canada

For the second year in a row, Orangetheory Fitness is giving its members (and the community) a way for you to make an impact while getting in a good workout. It’s a win-win! On May 1, 2019, Orangetheory Fitness is launching a campaign throughout Canadian studios to benefit the ALS Canada Research Program. Their inaugural […]

Celebrating Your Impact: ALS Canada Volunteers

In celebration of 2019 National Volunteer Week #NVW2019, you’ve heard from volunteers who support the work of ALS Canada in different ways.  You’ve read about what they do, why they do it and about memorable experiences they’ve made along the way. Whether you are fundraising, creating awareness, providing event support or working behind the scenes […]

ALS Research Matters

The realities of living with ALS – a challenging and terminal disease – led Carol Skinner and Eddy Lefrançois, two Canadians affected by ALS, to start a letter-writing campaign. The campaign encouraged fellow Canadians to contact their elected federal representative to ask for sustainable and direct ALS research funding. Over 2,300 Canadians joined Carol and […]

Health Canada has approved Radicava (edaravone), a second ALS treatment for Canadians

Highlights: On October 4, Health Canada approved Radicava (edaravone) for the treatment of ALS. Health Canada’s terminology for this approval is called a Notice of Compliance, or NOC. The approval follows a 180-day priority review of the drug. Approval from Health Canada means that Radicava (edaravone) can be marketed and sold in Canada. Other considerations, […]

Radicava (edaravone): Make your voice heard

Updated July 18, 2018 The Canadian Agency for Drugs and Technologies in Health (CADTH) recently posted an open call for patient input on Radicava (edaravone). This is an additional step along the approval and affordability pathway for the drug, which is currently being reviewed by Health Canada. In response to CADTH’s call for patient input, […]

How new drugs become approved and available to Canadians

With the news that manufacturer MT Pharma is pursuing the regulatory channels necessary to bring the drug edaravone to Canada, the ALS community in this country finds itself facing the possibility of a second treatment option nearly 20 years after riluzole was approved. But how does any new drug become approved in Canada – and […]

MPs give ALS a voice in Parliament

In 2016, a group of parliamentarians and senators from all major political parties united to bring awareness to the challenges facing Canadians living with ALS. Chaired by Francis Drouin, MP for Glengarry-Prescott-Russell, the creation of the ALS Caucus on Parliament Hill was a significant achievement, and ALS Canada is proud to have played a role […]

Paying it forward to benefit people with ALS in the future

Deirdre O’Connor and her husband, Floyd, became ALS Canada donors 15 years ago. At the time, they had no personal connection to the cause, but they liked the fact that ALS Canada was a small, cost-effective charitable organization without a lot of overhead. Deirdre’s generosity extends to half a dozen or more organizations she supports […]

Government of Canada has announced the activation of the extension of the Compassionate Care Benefit (CCB) from six to 26 weeks

We are pleased to advise you that the Government of Canada has announced the activation of the extension of the Compassionate Care Benefit (CCB) from six to 26 weeks. Effective January 3, 2016, caregivers can now claim up to $13,624 in benefits, where previously it was $3,144. We hope this announcement will now relieve some […]