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Fundraising walk shows those with ALS 'they are not alone'

Pauline Murray holds ‘Living the Gift,’ a book she produced from her late husband Charles’ personal blog about his experience living with ALS, also known as Lou Gehrig’s Disease. Charles passed away in 2015.
Pauline Murray holds ‘Living the Gift,’ a book she produced from her late husband Charles’ personal blog about his experience living with ALS, also known as Lou Gehrig’s Disease. Charles passed away in 2015. - Sara Ericsson

ALS society fundraising goes toward $70,000 in medical gear per patient

WOLFVILLE – Pauline Murray’s eyes shine as she talks about her husband, Charles, who lost his battle with ALS in 2015 at the age of 73.

Charles was someone who’d barely ever been sick before his sudden Amyotrophic Lateral Sclerosis, or ALS, diagnosis – also known as Lou Gehrig’s Disease.

Murray is now a board member of the ALS Society of New Brunswick and Nova Scotia, where she works to ensure others affected by ALS know what help is out there. The society’s biggest fundraiser, the ALS Walk Strong, is coming up on Sept. 22 in Berwick.

“The walk was a big event for us as we supported Charles. It’s a great day, and it lets people affected by the disease know they are not alone,” says Murray.

The team gathered at a Walk Strong event with Charles, centre, surrounded by his support squad.
The team gathered at a Walk Strong event with Charles, centre, surrounded by his support squad.





‘He’s still with me’: Murray

The couple were together for more than 40 years and shared a unique, strong love that kept them afloat even through Charles’ devastating diagnosis.

Murray says even after his passing three years ago, she still refers to Charles in the present tense when talking about him.

“He’s still with me, and I really think he’s still part of my life. That doesn’t feel like it’s going anywhere, anytime soon,” she says.

The society helped Murray as she navigated becoming Charles’ primary caregiver, and as they both learned how the diagnosis would change their lives.

They were able to borrow nearly all of Charles’ medical equipment through the society – people with ALS borrow $70,000 of equipment on average – but the society helped with more than the finances, says Murray.

“They helped us with the minutia of it all – which forms to fill out, which prescriptions would be needed, medical care – the things we would had no idea how to start with,” she says.

'An incredible financial burden:' Murray

Walk Strong events are the society’s biggest source of fundraising, as it receives no government funding.

Charles kept up with his blog throughout his illness, says Murray. She remembers him facing each day with humour and sass despite the devastating diagnosis.
Charles kept up with his blog throughout his illness, says Murray. She remembers him facing each day with humour and sass despite the devastating diagnosis.

And with ALS being a costly disease, Murray says the society needs all the help it can get so it can continue shouldering medical expenses for each family.

“It’s an incredible financial burden that’s taken off each family. Imagine a single parent, facing a diagnosis, looking at a cost like that,” says Murray.

Murray recalls what it was like being by Charles’ side as he faced ALS. She says he met every day with humour – along with a touch of sass, she laughs – and captured everything in a powerful blog he kept, documenting what it felt like being trapped in his own body.

Murray will sell copies of ‘Living the Gift’, the book she produced from Charles’ blog posts, at the walk in Berwick.

"It’s something I bring with me because it helps people remember who Charles was, and also gives them insight into this awful disease,” she says.

The event will begin at 11 a.m. at Centennial Park, with the walk portion kicking off at noon.

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