It’s the common, devastating disease you’ve never heard of.
ALS, or Lou Gehrig’s disease — a fatal motor neuron disease — is as common as multiple sclerosis, said Lianne Johnston, regional manager with the ALS Society of Ontario. “But you don’t get to hear about it.”
Because the disease affects its victims so greatly — patients lose their abilities to walk, talk and even breathe— and the caregiving duties usually fall to family members, there is very little time for supporters to create awareness, she said.
But this Saturday at Lansdowne Park, the Ottawa Walk for ALS aims to do just that, and to raise a little money as well.
The fundraising goal, $128,000, is just enough to bring Ottawa to the $1 million mark in the nine years the walk’s been happening, said Johnston.
“With the economy the way it is, the sponsorship dollars might not be the same this year,” said Johnston.
Still, it’s an important cause.
Proceeds from the 5K walk — one of 28 walks happening across Ontario this spring — will support services, the purchase of equipment and research.
“It’s a difficult disease,” said Johnston. “There’s no cause and no cure, and the costs are enormous.”
While 3,000 people in Canada have been diagnosed with ALS, the ALS Society in Ottawa has 116 clients, with 16 new referrals coming in since January.
In the same time period, there have been 14 patient deaths.
“The equipment costs are high and the caregiving needs are huge,” said Johnston. “There’s so little you can do for someone with the disease. To come together for the walk is a way of showing support.”
