Even a high level of awareness about ALS cannot fully prepare anyone for what it takes to navigate the changes that occur as the disease progresses. Charlotte and Bob Brethour have faced many difficult hurdles, but they still appreciate every day they share together, “even when the best-laid plans have gone awry,” says Charlotte. “We’re just handling things the best we can,” explains her husband and caregiver, Bob.

Participating in a virtual Walk to End ALS is just one more unexpected turn of events the couple has embraced with open arms. “A virtual event may give supporters from different areas of the province a chance to feel just as involved as the rest of us,” says Bob. “We’ll all be connecting online together no matter where we find ourselves on June 21st.”

Since her ALS diagnosis in August 2019, Charlotte’s speech has been severely compromised. Bob translates for her when it’s difficult for others to follow, and she uses text messaging to stay in touch with friends and family. Eating is becoming more challenging as her ability to swallow lessens. Yet despite the many formidable challenges, Charlotte is grateful for every day, taking regular yoga classes to help maintain mobility, regulate breathing, and reduce her stress. Now that close contact with friends has been restricted, she takes pleasure from the occasional outdoor visit on the driveway at a safe distance apart.

People with ALS often talk about feeling isolated. COVID-19 has made the situation even worse. Now more than ever, community matters. For Charlotte and Bob, the tight-knit group they have come to know through their local ALS Canada support group is a place where they continue to draw comfort. Sharing stories and practical tips through videoconference with professional guidance from their ALS Regional Manager, Sarah McGuire, has been an enormous help in the absence of face-to-face contact.

In a similar way, the Walk to End ALS allows families affected by ALS to feel supported. Bob was worried donors would hold back given the hardships people are facing as a result of the pandemic, but he and Charlotte had to raise their initial fundraising goal of $2,500 to $10,000. “The response has been overwhelming,” he says, “including donations from people we did not expect.”

Last month, Bob and Charlotte had planned to celebrate their 45th wedding anniversary in Europe. Instead, Charlotte told Bob she would like to “get all dressed up and have a nice dinner at home as if we were going out to a fancy restaurant.” There were tears of regret when Charlotte announced her plan, but also tenderness and laughter in the realization that she and her husband were still managing to make the best of a heartbreaking situation. And their loved ones helped to celebrate the milestone, too: more than 30 cars of friends did a drive-by visit to share their best wishes.

Charlotte’s indomitable spirit echoes the resilience of the entire ALS community. Changing the future of ALS will take a massive collective effort, but the Brethours are ready to take on the challenge. “Every dollar raised gives us hope for a cure,” says Bob. “ALS doesn’t stop and neither will we!”

On June 21st, Global ALS Awareness Day, let’s stand behind Bob and Charlotte, and 3,000 Canadians with ALS all refusing to let the disease extinguish their zest for living.

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/