Walking for a Cure for ALS
Charlene Vohar, Walk Co-Ordinator, Diane Jensen, and Wendy Toyer, Executive Director of ALS Society of B.C. pose with image of Lou Gehrig
Prince George, B.C. – With purple balloons, purple t-shirts , the annual walk for ALS is underway in Prince George.
Amyotrophic Lateral Sclerosis, ALS for short, is best known as Lou Gehrig’s disease. “I think ALS is known to people who have ALS, but having a walk like this and having the media to support us, makes a huge difference into creating awareness to let people know what ALS is but also that there’s help through the ALS society of B.C. ” says Wendy Toyer, Executive Director of the ALS Society of B.C.”
She says while there are increasing numbers of ALS cases, it’s not because there is a greater occurrence of the disease “More people are becoming aware sooner, if they are starting to present signs of muscle atrophy, slurring speech, because we have been out there promoting what ALS is, they will ask the question, ‘could this be ALS?’. because unfortunately this disease is often diagnosed through elimination, and it is often the last thing that is on the list.”
She says many people have said they thought they had ALS for about 2 years before it was confirmed that they had it.
Living with ALS is a challenge says Toyer “Not only for the person who is living with the disease but their family and their caregivers in particular. The disease slowly paralyzes the body and unfortunately, it rarely affects the mind. So as a person’s body gets to the point where maybe they can only blink their eyes, their mind is totally functioning, so you are trapped in your own body.”
While there is no cure for ALS, Toyer says there is reason to be optimistic “I have been doing this for 12 years and during that time I have seen significant progress with ALS research.” She says the ALS ice bucket challenge last year, injected a huge amount of money into the ALS research pipeline “We are now 75% of the way, but we need that extra 25% to continue to fund our researchers because we don’t want to go back to w where we are losing that knowledge and that expertise.”
Canada has joined “Project Mind” says Toyer “Project Mind is a collaboration of 17 countries that are all researching ALS and sharing the data. They are doing DNA mapping of 15 thousand ALS patients around the workd and 7500 people who don’t have ALS to try and understand the genes that are affected by ALS as well.” B.C. has a part in that research with testing being done at G.F. Strong hospital in Vancouver.
“I am very optimistic that within my lifetime, we will have an effective treatment for this disease” says Toyer
The Prince George walk was one of three ALS Society events recognized by the Society for its Walk, the award recognizes growth in participation, growth in revenue and innovation. This year vendors have been invited to set up at the walk site in Lheidli T’enneh Memorial Park to be part of the event.
The fundraising goal for this year’s walk in Prince George is $25 thousand dollars.