The Walk for ALS is coming to Parksville June 7 to help bring a community focus and awareness to the devastating disease.
ALS patient Joanne Stark encourages people to come out and join them and donate to help fight amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, a neuromuscular disease with no known cure, cause or effective treatment.
"In September, 1997, I began experiencing slurred speech, choking and tripping, and was diagnosed with ALS in September, 2000," Stark said by e-mail, explaining it is hard for her to talk on the phone.
"At that point, the world seemed to spin out of control. It is now 2015, and I know that I have beaten some brutal odds: at least 80 per cent of people with ALS die within two to five years of diagnosis."
"I moved to Parksville from the Lower Mainland in July, 2005 when I could no longer live safely on my own. My parents built a wheelchair accessible suite onto their rancher for me," she said.
"As much as I try to ignore the fact that I have ALS, this relentless disease reminds me of its ever growing hold... every time I struggle to get out of my wheelchair, every time I labour to turn over in bed, every time I fight to make my voice understood, every time I must ask for help to do even a simple task that I used to be able to handle with ease."
"I am lucky, though. A community of love and support surrounds me — family, friends, colleagues, medical and Island Health home care professionals, and the wonderful ALS Society of B.C. network. And my community is supported by further networks of individuals and businesses, all committed to helping in any way they can. So many people on my team!"
She said despite all the support there is still no cure and they need all the funding they can get to find one, or at least develop treatments.
"ALSBC has specifically provided me with many pieces of equipment: walker, toilet riser, bath transfer bench, hospital bed, safety rails and poles, power wheelchair — I'm actually on my third power wheelchair provided over the years. As my needs change, they are very proactive in providing replacement equipment."
"Joanne has enormous determination and grace and she is an exemplary spokesperson and an inspiration to others who are afflicted by ALS," said supporter Susan Mills who encouraged The NEWS to contact Stark.
This will be Stark's tenth year participating in the Peoples Drug Mart Mid-Island Walk for ALS.
"In the past nine years, my friends and family have donated more than $44,000 to the Mid-Island Walk for ALS. So far this year, my team has raised $3,170 and more donations are coming!"
Registration starts at 10 a.m. behind the Parksville Civic and Technology Centre (by the cenotaph), and the walk starts at 11 a.m. Register free online or on the day of the walk.
For more information and to register visit www.walkforals.ca. Click "Make a pledge" and search "Stark." You can also send a cheque to "ALS Society of BC" care of Stark at 612 Chinook Avenue, Parksville, B.C., V9P 1A5. Include your mailing address to receive a tax receipt.