Climbing for a cure
ALS Society of Canada
by Jennifer Asselin
2w ago
In just a few short weeks, Chris Clarke will embark on one of the most challenging physical journeys he’s encountered by trekking Mount Kilimanjaro in Tanzania, but it’s nothing as tough as the journey he and his family faced with his dad’s ALS diagnosis. “Our world changed quite a lot,” says Chris, 28-years-old, whose dad, Aussie Clarke, was diagnosed with ALS in July 2021. “Things moved really quickly. Within the course of a few months of his diagnosis he had lost the ability to move independently without aides and then a few months later he had vocal changes and ultimately lost his ability ..read more
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“While I still can, I will inspire my community to learn about ALS”: Jane’s story
ALS Society of Canada
by Roula Giannidis
1M ago
There’s hardly a spot left on Jane’s left arm these days. That’s because so many of her family, friends, and neighbours are getting a tattoo with Jane — they choose one that’s meaningful to them and Jane gets the same one on her own arm. This shared bond will be an everlasting part of her legacy when she’s gone. It’s a powerful way to raise awareness about her disease. Jane and her husband David learned she had ALS in 2020, after a slur in her speech and a series of tests revealed she had bulbar onset ALS. “Bottom line, everything changes,” Jane says. “Many thoughts go out the window in a spli ..read more
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ALS Canada Advocacy Update – October – December 2022
ALS Society of Canada
by Ilayda Ulgenalp
1M ago
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. Therapeutics updates ALBRIOZA (AMX0035)  e-advocacy campaign: In late October, ALS Canada launched an e-advocacy campaign focused on expedited and equitable access to ALBRIOZA (AMX0035). The campaign calls on participants to email ..read more
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“While I still can, I will cherish my time with my children”: Anne-Marie’s story
ALS Society of Canada
by Roula Giannidis
1M ago
Anne-Marie Marcil considers herself the luckiest unlucky woman. Last year, in April, amid all the uncertainty of the pandemic, she was diagnosed with ALS at just 46 years of age. As a mother to two young daughters, aged seven and 10, this profoundly and unexpectedly changed her outlook on life. “I do not dwell on the little things that used to keep me up at night,” she says. “Now it’s all about relationships and interactions with people I love and who love me.” Shortly after receiving her diagnosis, Anne-Marie was connected to her ALS Canada Community Lead, who has helped her and her family ge ..read more
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You’re supporting the ALS community today and tomorrow
ALS Society of Canada
by Roula Giannidis
2M ago
It’s been 15 years since my cousin Doug, who was like a big brother to me, was diagnosed with ALS. Our options were limited then with only one approved therapy available. We didn’t know what to do and who to turn to as we navigated the bend in the road. Today, when I reflect on developments in the ALS community, I am in awe, and most of all grateful, to the donors who continue to support our mission at ALS Canada. As the needs of the community change, we as an organization have evolved to meet these needs. I want to share with you a few of the ways your donations help shift the reality of ALS ..read more
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Major investment in top talent in ALS research
ALS Society of Canada
by Anqi Shen
2M ago
Toronto – The ALS Society of Canada (ALS Canada) and Brain Canada are powering innovative discoveries and treatments for amyotrophic lateral sclerosis (ALS) through exciting new research funding. Together they are investing a total of $390,000 to support three doctoral awards and one postdoctoral fellowship. These projects will build on existing knowledge of the biological processes that lead to the onset and progression of ALS and explore new therapeutic targets and a possible treatment strategy for ALS. “Being able to move the needle on ALS research means supporting the brightest minds that ..read more
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ALS Canada to host information on IMD Health to improve quality of health education for people living with ALS
ALS Society of Canada
by Anqi Shen
3M ago
The ALS Society of Canada (ALS Canada) is pleased to be collaborating with IMD Health to provide easily accessible, up-to-date digital health education to healthcare providers, people living with ALS, and their families on the IMD platform.   Empowering Canadians affected by ALS to be informed consumers of ALS information is one of the cornerstones of ALS Canada’s mandate. Having a presence on the IMD platform will contribute to more people having access to the information they need when it comes to making decisions about their health and advocating for themselves and the ALS communi ..read more
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From scientific curiosity to a breakthrough ALS research discovery
ALS Society of Canada
by Anqi Shen
4M ago
I am an ALS scientist. For years, I have been spending my days conducting research in the lab. We are always trying to find the next big discovery, and today I want to tell you something: the biggest discovery of my career almost didn’t happen. But it did, thanks to ALS Canada. And thanks to their generous donors. Years ago, we were studying the tiny junction between the nerve cells in our spinal cord and our muscles. For years, conventional research had told us this junction wasn’t relevant for ALS research. It was neglected and overlooked. Due to the long-held belief that paralysis happens i ..read more
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ALS Canada Advocacy Update – July – September 2022
ALS Society of Canada
by Ilayda Ulgenalp
5M ago
This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government. Therapeutics updates ALBRIOZA (AMX0035)  CADTH: On August 8, the Canadian Agency for Drugs and Technology in Health (CADTH) released its final recommendations on ALBRIOZA. In late June, ALS Canada and the Canadian ALS Clinical com ..read more
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ALS Canada Pull to End ALS
ALS Society of Canada
by Anqi Shen
5M ago
TORONTO – It takes more than just pure strength to pull a 42,000-lb transport truck by hand for 100 metres. It takes teamwork and a passionate commitment to pull together for change – for a future without amyotrophic lateral sclerosis (ALS). That’s what teams of 10 will be competing to do on Saturday, October 1 at CityView Toronto, 20 Polson Street as part of the ALS Canada Pull to End ALS. ALS is a devastating disease that moves with startling swiftness. It progressively paralyzes people and over time, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually b ..read more
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