ALS walk brings community together for a cure

Sunday's walk contributions fund ALS research and support

Walkers return to the University of Victoria this weekend for the annual walk in support of those living with ALS

Rick Stiebel

Black Press

They walk for those who no longer can.

The 15th annual Peoples Drug Mart Walk for ALS unites families, teams, volunteers and sponsors to generate awareness and raise funding for support and research for local families waging the daily battle against Amyotrophic Lateral Sclerosis.

ALS is a fatal neuromuscular disease that affects the motor neurons that carry messages to muscles. When muscles fail to receive those messages, they lose strength, atrophy and die, resulting in immobilization.

Lisa Ruffolo was diagnosed with ALS 19 months ago.

The local mother of two had sought medical advice when she started to notice weakness in her right hand. After visits to specialists in Victoria and Vancouver, the 45-year-old teaching assistant and her husband were informed that the prognosis was three to five years.

“I remember sobbing and repeatedly saying, ‘But I’m healthy. I hardly ever drink, I’ve never done drugs, I go to Jazzercise four or five times a week, and I’m in the best shape of my life,”’ she said. “But the doctor told me ALS strikes like lightning. There are no known causes.

“Since ALS burst into my life 19 months ago, my strong body is slowly being robbed of its abilities,” she said.

“I depend on others to help me with things I never used to think twice about, putting a sleeve on my Starbucks coffee, zipping up my jacket, two-handed things. I feel incredibly loved and cared for by my family, friends and kind people I meet when I’m out and about. This stupid disease makes no sense. I have found a sense of peace that can only be explained by the immense love and goodness that others show on a daily basis.

“Our community, the people we see every day, I truly believe will reach out a hand to help another if they see the need.”

That’s why Ruffolo and everyone affected by ALS are hopeful that research will identify the causes and find a cure, and why fundraisers such as the People’s Drug Mart Walk for ALS Victoria are so vital.

This year’s walk takes place Sunday, Sept. 18 at the University of Victoria parking lot 10 beginning at 11:30 a.m., with the five-kilometre walk set to start at 1 p.m.

The Victoria event is one of the original ALS walks in the province, beginning before the walks became a national initiative in 2005, said Wendy Toyer, executive director for the ALS Society of BC.

Victoria and the North Central Island are the only ALS societies in Canada that are completely volunteer driven, she noted.

“It’s a significant fundraiser and a signature event, a really important part of our volunteer-run support groups,” Toyer said.

She praised the efforts of volunteer patient services co-ordinator Ellen Mahoney in particular, a nurse who has volunteered countless hours during the past 30 years.

“I wish we could clone her and have her working all over the province,” Toyer said. “She’s very low key and very supportive. I’m sure anyone affected by ALS in Victoria is very thankful for what Ellen has done.”

The People’s Drug Mart Walk for ALS Victoria has raised $581,712 since 2006, representing a significant portion of the more than $4.7 million raised provincewide to date.

Victoria’s walk is also one of the largest in Canada, sharing that distinction with the Richmond-Vancouver Walk for ALS.

Local walk co-ordinator Cheryalee Hutchison said in a media release that “right now the ALS community has an extraordinary chance to step forward with renewed confidence and vigour.”

Proceeds of the event will ensure promising research is funded, and support is provided to people affected by ALS in our community, Hutchison noted.

“Thanks to the support of our sponsors and the extensive network of committed ALS volunteers in our community, we are making unprecedented inroads.”

Sixty per cent of contributions to the walk go toward supporting the ALS Society of B.C.’s patient services program, with the remainder earmarked for the ALS Canada research program.