Fundraising for ALS is a family affair

Walk for ALS

Oakville's Walk for ALS takes place May 19 at Bronte Creek Provincial Park.

To support Kaitlynn Roberts' group, Peter's Path, click here.


For information about Amyotrophic Lateral Sclerosis, see als.ca.
Cousin's death from ALS turns Oakville student into activist

Mar 25, 2008 04:30 AM
Barbara Turnbull
Living Reporter

Kaitlynn Roberts' first funeral made a tremendous impact on her at age 14.

It was two years ago and her cousin Peter Kostiuk had become the 12th relative known to die from Amyotrophic Lateral Sclerosis (ALS), commonly called Lou Gehrig's Disease.

His three brothers and sisters also have the disease and their children have a 50 per cent chance of acquiring the progressive neurodegenerative disorder, which paralyzes then kills.

"Going to the funeral and seeing everyone cry, it just hit me. Something needs to be done," says Roberts, a student at Oakville Trafalgar High School.

She got together a group to participate in the annual Walk for ALS, a series of fundraising and awareness events held across the country throughout the year. She named it Peter's Path, to honour the man who'd grown up with her father and had just died.

"I didn't realize how terrible it was until Peter died," she says. "My dad ... used to tell all the stories about him. When he died it was a big thing for me."

In her family, diagnosis typically comes between the ages of 25 and 30 and takes between 10 and 15 years to lead to its fatal conclusion. Symptoms are muscle weakness, twitching and cramping, with increasing impairment.

"It's brutal seeing them progress," Roberts says. "Sometimes by the end, they can't even breathe for themselves."

Up to 95 per cent of the 3,000 Canadians living with ALS got the disease randomly. Roberts' relatives are among the five to 10 per cent stricken with familial ALS (FALS), but they make up an even smaller subgroup.

"We've collected DNA from maybe five or 10 families from Canada and France that have this kind of profile," says McGill University's Paul Valdmanis, who is studying FALS for his PhD. "In Canada, I would say there (are) maybe three or four families that would be like this. It hits them quite hard."

Most cases of FALS involve two or three members typically separated by generations or extended family relations. One sufferer may have had a grandparent or a second cousin also stricken. Extremely few are like Roberts' family, for which it is a scourge.

Her paternal grandmother was spared, but each of those siblings had or has it. Of the four children belonging to one of those siblings, three are battling it; the fourth was Peter.

"I want people to know about ALS ... it's a terrible disease," Roberts says. "My whole school knows about it now. There are flyers up all over."

She raised close to $5,000 the first two years she led the walk and hopes to raise a total of $10,000 before she finishes high school. She's got two years for that.

Although Roberts' immediate family seems to have escaped ALS' clutches, she doesn't feel safe. She knows she's more likely to get it than her friends.

But it has united the family in a special way, she notes. "We all know that, obviously, there's not a lot of time to spend with your family. We don't know how fast it might progress for them because it is different for every person. And we are happy with each other, we have fun together."

Like the disease, these walks are a family affair.

"Everyone is trying to find the cure together," she says. "I feel as if we are making a difference."

http://www.thestar.com/living/article/350231