Little BC Community Does Big Things to Find a Cure for ALS

When Pam Caron is asked about being honoured by the ALS Society of BC for her volunteer work, she is unable to think about herself.

Instead, she thinks about Aladina Sheets.

Aladina was an OR hospital nurse who passed away in 2024 from ALS after a two-year battle with the nervous system disease that affects cells in the brain and spinal cord.

The diagnosis of Pam’s longtime friend led her to do a crash course in ALS, including the discovery that there is no cure.

That set Pam in motion to do something to change all that, including organizing the first Move to Cure ALS event in her hometown of Trail, BC – with “Team Aladina” leading the way.

Prior to moving to Trail, the nearest Move to Cure ALS event was in Nelson – an hour away.

With a deep history as one of the first events hosted in BC dating back to 2001, a shortage of volunteers and coordinators has shifted this event in various communities throughout the area.

The Trail event has now become the official site for the West Kootenays.

The 2024 event was so big it raised more than $60,000 for ALS Society of BC patient care services and research. Pam is humble, but you can hear the pride as she notes the dollar figure was the biggest in BC.

“We’re a small community, so the support is pretty big,” says Pam. “We raised the most out of the whole province. Like, we’re little Trail, we have 8,000 people. It says a lot about our community and who Aladina was to people.”

That’s the power of volunteering. That’s the power of one person taking a step forward, inspiring others.

That’s why the ALS Society of BC is recognizing Pam with its Roy Slater Volunteer of the Year Award – the highest designation the society awards to an individual. Pam will receive the award, along with 12 other honourees, on April 4 at the annual ALSBC Volunteer & Service Awards taking place in Richmond, BC.

Move to Cure ALS events are held across BC in June each year. The 2024 Trail event took place not long after the passing of Aladina. A celebration of life for Aladina was being planned and Pam says so many people wanted to attend it and the Move to Cure ALS event that the decision was made to have both on the same day. An estimated 1,000 attended the celebration of life – which took place in an arena – with nearly 500 taking part in the Move to Cure ALS event that followed.

“It was packed,” Pam says. “Everyone was consoling each other. People were all wearing Move to Cure ALS shirts. It was a very good closure.”

Two groups were instrumental in easing Pam’s path to organizing Move to Cure ALS events in Trail.

One was an existing group of volunteers in the West Kootenays who are dedicated to finding a cure.

The second is the ALS Society of BC. Pam says the society staff show a fierce commitment to volunteers, including travelling to the event site to help with all sorts of logistical details.

“The society is a very good resource,” Pam says. “Being able to reach out to them, it was amazing.”

But it’s not just their knowledge that helps volunteers, Pam says.

“They are very invested. Very heartfelt. They wouldn’t say, ‘Your friend,’ it was always Aladina. They made it very easy for me.”

The financial goal for the Move to Cure ALS events is $500,000 in B.C., with 60% of the proceeds supporting patient services programs and 40% for research through the ALS BC PROJECT HOPE initiative. There are about a dozen events taking place in various communities throughout the province, including some virtual events that you can host on your own. For a full schedule and to support a Move to Cure ALS event near you, please click here.

ALS BC PROJECT HOPE is based out of the University of British Columbia under the leadership of Dr. Erik Pioro, who has established a clinical care team that consists of a registered nurse, physical and occupational therapists, speech-language pathologist, dietician, and social worker.

ALS BC PROJECT HOPE is also a vital research centre for ALS, where Dr. Pioro and his clinical research team expect to implement groundbreaking clinical trials in the immediate future.

Pam has stepped back from organizing the Move to Cure ALS – West Kootenays event, but has passed the torch to other volunteers inspired by her leadership. The 2025 event will be held on June 14 at Trail’s Gyro Park, headed by coordinators Helen Vic Bobbitt and Wendy Quattrin Martin.

But you don’t have to organize events to be part of the solution. The ALS Society of BC has an entire volunteer program that allows people to help out in a variety of ways, from taking part in fundraisers to supporting staff at the society’s office. Volunteers have helped the society spend less than 15% on administration costs, meaning more money to find a cure.

All it takes is that first step. Just ask Pam.

For more details on volunteering opportunities with the ALS Society of BC, please visit here.