BY MARK WEBER
This weekend, the ALS Society of Alberta will be hosting its annual WALK for ALS at Bower Ponds in Red Deer on June 18th.
The event will take place on June 18th with registration at 9 a.m. and the kick off at 10 a.m.
Organizers say this volunteer-run event, which takes place in more than 90 locations across the country, encourages friends, family and communities to come together to celebrate and promote hope for a future without ALS.
Ultimately, the aim is also to raise funds for ALS research and support services.
Participants are encouraged to solicit donations, and can set up a personal fundraising web site to track their progress.
Sixty per cent of funds raised from each event goes to client support services in Alberta and 40% goes toward national ALS research. This year, the Red Deer WALK for ALS aims to raise $55,000.
For local resident Beth LeBlanc, it’s a cause that is indeed close to her heart. Her son Mark passed away from ALS in 2006 at the age of 41. This year, the LeBlanc family, which has been involved with the local walk right from its inception, has been designated the ‘Start the Walk’ family this year.
“I remember him coming home for his son’s graduation here,” she recalls of Mark first describing his symptoms. He was living in Ontario at the time. He told Beth that he felt like his one hand was getting smaller and weaker. The weakness progressed to his other arm and increasingly through his body.
“He would walk in a park in Toronto, and I remember him telling me that he fell forward because (of leg weakness) and he couldn’t support himself,” she said. Finally a diagnosis was made, and Mark eventually moved back to Red Deer.
Today, taking part in the walk and supporting the cause and the ALS Society is simply a must for Beth and her family.
“When we brought Mark home, the ALS Society was at our door soon after. We got in at 11:30 p.m. in Calgary and at 10 a.m. the next morning Jane from the ALS Society was here – they did everything they could for us,” she said.
Michelle Parker, co-chair of the Walk, first got involved with the ALS Society about 13 years ago. A friend’s mother had passed away from ALS, and at the same time, Parker found she had some extra time on her hands that she wanted to devote to a community cause.
There is a powerful sense of connection amongst those who gather each year for the event, she said, adding that, “It’s about families who are either going through it currently or have gone through it,” she explained. “They come together as a community of support at the walk.
“People know exactly what you are going through because they are going through it. Or it’s maybe what they are facing in the next year,” she said. “It’s really a community.”
According to the ALS Society of Alberta, ALS (Amyotrophic Lateral Sclerosis) is also known as Lou Gehrig’s disease. ALS is a rapid, always fatal, neurodegenerative disease. It attacks the nerves that the body would normally use to send messages from the brain to the muscle, resulting in weakness and wasting.
Eventually, the individual with ALS is left completely immobilized, with loss of speech and eventually an inability to swallow and breathe. The average life expectancy from symptom onset is three to five years.
Approximately 3,000 Canadians live with ALS and two to three Canadians die every day of ALS. There is no known cause or cure for this devastating disease.
ALS can strike anyone, at anytime, regardless of age, sex or ethnic origin. The usual age of onset is 55-65, but people under 20 have been diagnosed.
A person with ALS can require equipment and care valued at more than $250,000.
The cause is unknown. There is no known cure or treatment that prolongs life significantly – yet.
Of course, awareness of ALS reached unprecedented heights with the incredibly popular Ice Bucket Challenge which was launched in 2014, which saw people from all walks of life have an ice-cold bucket of water poured on their heads in a bid to raise funds for ALS research across the globe.
In 2014, more than 260,000 Canadians dumped a bucket of ice over their heads and made a donation through the Ice Bucket Challenge.
It was also important as knowledge of the disease in general isn’t always very well known. And as generations come and go, fewer people know who Lou Gehrig – the famed baseball play who died of the disease in 1941 – even is.
Meanwhile, Parker said that the community support has been fantastic over the years, too. Last year about 250 people took part in the walk and some $40,000 was raised. “It’s the families that you meet. When you are at the walk and you see what they’ve gone through – you can see fear, you can see sadness, anger. They all come together with this common need for a cure and a need for answers.
“It’s a blessing to be a part of it.”
For more information, check out www.walkforals.ca.