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October 27, 2017 4:58 pm

Walking for a Cure for ALS

Sunday, June 25, 2017 @ 12:00 PM

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.


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