Team “Living into a Cure” is keeping hope alive

It is possible to sustain hope even in the face of a terminal disease.


Charmaine Loverin, who was diagnosed with ALS last year, has stayed positive through tremendous change and upheaval imposed by the disease, especially during the COVID-19 crisis. She left her home and relocated to Belleville to live with her sister, Michelle, who reached out with “open arms.” After the move, Charmaine returned to Toronto on a regular basis to visit her children, Emmaskye, 18, and Ralston, 17, and to participate in a promising ALS clinical trial at Sunnybrook Hospital. With the arrival of the pandemic, she was forced to move back to Toronto temporarily in order to avoid contact with members of her sister’s household who work on the frontlines, and whose work put them at higher risk of contracting the virus. It was a hard decision to make, but it allowed Charmaine to continue with the clinical trial that is fuelling her optimism and her hope for a cure for ALS.

© Photo provided by Charmaine Loverin

Charmaine is encouraged by the scientific progress being made by ALS researchers to better understand what causes ALS and how it can be treated. The team name she’s chosen for the 2020 Walk to End ALS – “Living into a Cure” – says a lot about her faith in the work being done to accelerate the pace of research.

“I’m so blessed to be part of the clinical trial at Sunnybrook,” she exclaims, “and so fortunate to have access to a recently approved treatment, Radicava, that is showing promise for slowing down the disease. But I also know there’s a lot we still need to do in terms of research investment and advocacy work so we can get promising new treatments to patients more quickly.”

© Image from @charmaineloverin on Instagram

Charmaine is supporting the Walk to End ALS because she knows first-hand the difference community-based services can make. She is effusive about the value of one-on-one support she receives from her ALS Canada Regional Manager, as well as access to group support and loaned equipment. “The compassion and service level of ALS Canada staff is absolutely incredible,” she says. “They do so much… and then some. I’ve never felt left aside. I’ve never had to wait. I’ve been generously supported mentally, emotionally, physically.”

If Charmaine has one message to share with potential donors, it’s this: “I can tell you from my own experience. Donor dollars help so much because they enable support to be provided directly to people who need it most.”

The Walk’s pivot to a virtual event is not stopping Charmaine and her friends and family from feeling excited about it. In fact, she has a sparkle in her voice when she talks about how passionate she feels about engaging in the cause. “I think the idea of a virtual event could actually enhance and expand the event,” she says. “Whether it’s setting a 5km goal or just doing something fun for two hours, it’s going to be a wonderful opportunity for community bonding – even if people have to stay six feet apart. We’re all going to have a great day on June 21st, no matter where we live.”

The Walk to End ALS is the largest volunteer-led fundraiser for ALS Societies across Canada. Your fundraising efforts and generous donations support the best ALS research in Canada and enable ALS Societies to provide community-based support to people and families living with the disease. In 2020, the Walk is going virtual for the first time ever! Register and start fundraising today at https://walktoendals.ca/