Making ALS a treatable, not terminal disease

ALS Societies mark ALS Awareness Month in June

TORONTO, ON (June 1, 2017) – The first day of June marks the beginning of ALS Awareness Month in Canada. And while more Canadians may be familiar with ALS as a result of the Ice Bucket Challenge in 2014, there remains much more work to do to help people understand the devastating impact of the disease, its terminal outcome, and the great need for better funding. ALS Societies across Canada are 100% funded by donors, whose generosity is essential in funding research to make ALS a treatable, not terminal disease and in providing support to people and families living with the disease.

Receiving an ALS diagnosis is overwhelming, and living with the disease is not an easy journey. ALS, which stands for amyotrophic lateral sclerosis, is also known as Lou Gehrig’s disease and Motor Neuron Disease. The 1,000 Canadians who are diagnosed with ALS each year face progressive paralysis as a result of the brain no longer being able to communicate with the muscles of the body. Over time, as the muscles break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. There are approximately 3,000 Canadians living with ALS at any time. There is no cure for ALS, it can affect anyone, and 80 per cent of people diagnosed die within two to five years – though research advances are providing an increasing source of hope.

“There is great reason to be hopeful about the promise of effective treatments for ALS, and the research community is telling us they are a matter of ‘when,’ not ‘if’,” says Tammy Moore, CEO of the ALS Society of Canada. “We know this day cannot come soon enough for people and families living with ALS, which is why ALS Societies across Canada continue to invest in ALS research based on best practices in research funding with the greatest potential to make a difference – while also supporting the needs of people and families living with ALS today.”

In 2016, approximately $6.2 million was invested in 20 different ALS research grants and awards funded through the ALS Canada Research Program. Of this amount, $3.5 million was contributed by generous donors and partnerships with provincial ALS societies. An additional $2.7 million was matched by the Brain Canada Foundation through the Canada Brain Research Fund (with the financial support of Health Canada) as a result of their partnership with ALS Canada following the Ice Bucket Challenge.

With volunteer-led WALK for ALS events taking place in more than 80 communities across Canada in the coming months, the country’s ALS Societies are hopeful that donor generosity will result in a fundraising total close to $4 million. Of the net WALK proceeds, 60 per cent are used to provide support to people and families living with ALS while 40% are contributed to the ALS Canada Research Program, which receives additional funding support throughout the year thanks to donor generosity.

To acknowledge ALS Awareness Month, yesterday MPs David Tilson and Judy Sgro made a Member’s Statement in the House of Commons. Mr. Tilson, whose father died of ALS, is a member of the all-party ALS Caucus that was formed in late 2016. Chaired by MP Francis Drouin, the ALS Caucus is focused on opportunities related to ALS research and care. Earlier this year, a private member’s motion calling on the federal government to play a leadership role in supporting ALS research and awareness was introduced by MP Judy Sgro, who is also a member of the ALS Caucus, and approved unanimously in the House of Commons.

Canadians can get involved in ALS Awareness Month by donating to an ALS Society across Canada, by registering for a WALK for ALS at and by continuing to raise awareness.

About ALS Societies across Canada
ALS Societies across Canada provide services and support to people and families touched by ALS in their provinces and contribute to the ALS Canada Research Program. The ALS Canada Research Program supports the Canadian ALS research community and uses best practices in research funding to award grants with the greatest potential to make ALS a treatable, not terminal disease. ALS Societies advocate federally, provincially and locally on behalf of people and families living with ALS for better government support and access within the healthcare system. ALS Societies survive on donations and funds raised throughout the year.

For more information, please contact:
ALS Canada Marketing and Communications; 416-497-2267 ext. 234