Organizers of the ALS walk on June 22 have had their wish granted. On May 21 they asked the city of Williams Lake to declare ALS awareness week June 17 to June 23.
At its meeting June 4, council approved the request.
On May 21 Candace Morrison asked the city to consider making the entire week a focus on the disease.
“The walk is a gift of hope because 40 per cent of the funds raised are invested in vital research,” Morrison told council. “They are close to finding a cure and probable treatment of ALS, but we need money to fund that research.”
She also encouraged council members to be part of raising awareness about the disease.
Eileen Campbell also spoke to council.
Her husband Hugh passed away in September 2010 at the age of 53 after being diagnosed with ALS in June 2008.
“We had no idea what those three little letters meant when we were told at the doctor’s office his bloodline carried the disease,” Campbell said.
From that moment the family became very aware of the disease and realized there was little awareness of the disease amongst the general population.
“I think that’s because there is no money spent on administration,” she said.
Eighty-five per cent of the money raised goes directly to patient care, research and not to sending out mail outs, which Campbell said she has mixed feelings about.
“I’ve only ever seen one commercial and I know my husband felt excited when he saw it because we didn’t know what it was. Here in Williams Lake when he was sick, he never met one person with ALS.”
The Campbells moved to Williams Lake in 2005 and it wasn’t until they went to the Prince George ALS walk that they experienced a personal connection with ALS.
“We met people there that were affected by ALS and felt like we were part of a group. We never had that here. His progression was so quick and Hughie was the first ALS patient his doctor here had ever had, and that doctor has since retired.”
Since her husband died, Campbell has been motivated to bring ALS awareness to Williams Lake and through the walk in 2012, that brought 100 people out and raised $12,000, she met people in the community personally affected by the disease.
“With the support of the city we can make it bigger,” Campbell added.
Campbell said currently there is no known cause, cure or treatment for ALS.
“I’ve been to a couple of ALS functions where scientists have spoken and I’ve read more research on it. They are looking at genetics and chromosomes, and they feel that they are within 10 years of a cure.”
Some of the funds raised at walks also goes to equipment.
Hugh’s wheelchair was worth $25,000, she said.
“It’s an extremely expensive disease.”
When Hugh was diagnosed the Campbell’s three children were 18, 16 and 13 years old.
“It was pretty big news for them. He almost immediately lost his mobility to walk. So there were lots of changes at home. He wasn’t able to work and it was six months before they made a diagnosis,” Campbell recalled.
Hugh chose to take no life-saving measures such as feeding tubes, because it delayed the disease, she added.
“Nothing changes in your mind or your organs, it’s everything else that wastes away.”
In May, Campbell took a leave of absence from work to care for Hugh full-time because he couldn’t be left alone.
“It never affected his speech very much. Sometimes he sounded like he’d been drinking because his speech was slurred a bit.”
Campbell said her husband would have liked to meet someone with ALS.
“That didn’t happen, but for some reason when I went to Prince George and the connection I felt with everyone at the walk there, really became important for me.”
If someone was diagnosed with ALS in Williams Lake, Campbell could share her journey with them, and possibly connect them with supports, something she said she and her family didn’t have.
For more information contact: Eileen Campbell and Heather Robertson, 250-989-0092 or 250-267-7611, firstname.lastname@example.org.