ALS News

Did you know Canada has an estimated 13.3 million volunteers? Along side other charities, ALS Canada will celebrate National Volunteer Week from April 13-19, 2015.

Join ALS Canada on Facebook and Twitter during National Volunteer week and give a shout out to our volunteers, or someone special you know who volunteers.

Every year, ALS Canada hosts a forum, bringing the ALS research community together to exchange ideas, network and form collaborations to find a treatment for ALS. This year, we will be meeting at the Hilton Toronto Airport Hotel in early May. We are excited for this year's Research Forum and welcome the research community to Toronto. 

A special thank you to Cytokinetics for being this year's Opening Session and Chair's Reception Sponsor.


Melanie was a spirited person, a strong and passionate advocate for the ALS community and was always there to lend her voice and her independent thinking to raise awareness for ALS. Melanie truly used her life to try better the lives of others. She was a significant and cherished part our team at ALS Canada and she will be deeply missed. 

Thank you to Macleans Magazine for publishing this tribute to Melanie. 

The ALS Canada Board is seeking nominations for Directors to serve on the Board of Directors.

ALS Canada is a registered charity, dedicated to supporting Canadians living with ALS (amyotrophic lateral sclerosis) and investing in research to make ALS a treatable, not terminal disease. 

A large consortium of researchers from six countries have definitively identified a new ALS gene called TANK-binding kinase 1 (TBK1) by performing a rigorous study that involved sequencing of more than 2800 people with ALS compared with more than 6000 control samples. Canadian researcher Dr. Guy Rouleau, Director of the Montreal Neurological Institute and his colleague Dr. Patrick A. Dion, along with current Tim E. Noël (ALS Canada) Postdoctoral Fellowship recipient Dr. Claire Leblond are authors on this landmark manuscript, recently published early online for the top journal Science. 

The Arthur J. Hudson Translational Team Grant was first announced on May 3, 2014 at the ALS Canada Research Forum and the inaugural competition deadline was July 1, 2014. This new grant program is designed to fund teams of Canadian researchers to accelerate the movement of ideas out of the laboratory and into the clinic with the hope of assisting development of new therapeutics for ALS. It is the cornerstone of our ALS Canada Research Program designed to emphasize bench-to-bedside translation.

ALS Society of Canada
Vice President Fund Development 

ALS Canada is looking for an energetic professional to join our team. We want to find a person who understands the critical contribution they will make to our vision to make a difference in the lives of people living with ALS today and to a future, where ALS will be a treatable, not terminal disease. They love a challenge, developing a plan and orchestrating a multi-disciplinary team to achieve outstanding outcomes in fund development and donor relations. Could this be you?

GivingTuesday is a global day of giving. It is a time to celebrate and give back to our fellow neighbours, friends and charitable organizations in need. GivingTuesday is a movement for everyone who wants to give something back.
You can do your part by making a donation, volunteering time, and even raising awareness with #givingtuesday. 

There are many different ways you can support the ALS community. Visit here and learn how you can get involved and give back.

The ALS Canada Research program was established to fund the top ALS research in Canada to meet ALS Canada’s strategic vision to find a treatment for ALS. Thanks to your support, we are pleased to announce the recipients of the 2014 ALS Canada-Brain Canada Discovery Grants.

This announcement marks the first grants named in the partnership with Brain Canada. As part of the ALS community, we are tremendously excited about that this partnership is able to fund world class projects that will ultimately move the field of ALS research forward.

This summer, with a bucket, ice and water, you have transformed ALS - a disease that before the ALS Ice Bucket Challenge was largely unknown.  Because of you, your recent gift through the ALS Ice Bucket Challenge is enabling the ALS Societies across Canada to inject $26 million into the ALS community over the next three years. 

Below is the formal announcement given today in Ottawa and distributed to the press. It outlines where your dollars will be used, as well as a special partnership, that we believe will contribute to changing the future of ALS. 

On Wednesday November 19, 2014 ALS Societies across Canada will be making an unprecedented announcement about the funds generously donated by Canadians through the ALS Ice Bucket Challenge. We will be making the official announcement at a press conference in Ottawa at 10:30a.m. At this press conference we will be sharing the phenomenal impact Canadians across the country have made for the ALS community. Because of their generosity through the ALS Ice Bucket Challenge, amazing things are happening and we can’t wait to share the details with you.  

The ALS Canada Board of Directors is pleased to announce the appointment of Tammy Moore as Chief Executive Officer to ALS Canada, effective November 10, 2014.
Earlier this year, ALS Canada underwent a leadership transition, requiring the ALS Canada Board of Directors to embark on a competitive and comprehensive recruitment process to fill the role of CEO. Upon completing a thorough and rigorous process, Ms. Moore was chosen to execute ALS Canada’s strategic vision.

Representatives of the ALS Societies across Canada met in Toronto this past weekend to give thoughtful consideration regarding the allocation of the funds raised through the Ice Bucket Challenges. As beneficiaries of these donations, we accept this task as a huge responsibility and are mindful of what this means towards fostering research and supporting families living with ALS. All ALS Society Boards will now be asked to ratify the decisions made in Toronto and an announcement of the final outcome will be made in November 2014.

ALS society lobbying for extended caregiver benefit in budget 2015


The Amyotrophic Lateral Sclerosis Society of Canada is using momentum from this
summer to carry the group through the fall parliamentary session and toward the 2015
federal budget.

The summer of 2014 will be known as the summer of the ALS Ice Bucket Challenge, when the world came to know ALS as a disease. This awareness led to support for ALS organizations that both help people living with ALS today, as well as facilitate research that will change the future of ALS.

Moving forward, we will keep you informed on how your funds given through the ALS Ice Bucket Challenge will help families across Canada, and the impact the dollars will have in funding ALS research to find a treatment. 


We have been getting questions whether your dollars from the Ice Bucket Challenge will also help families outside of Ontario. The answer is absolutely, yes. 

We wanted to re-post the details of ALS Canada’s 2013 financials numbers to ensure the information you receive reflects the fiscal responsibility and true facts around ALS Canada's financial performance. 

Firstly, ALS Canada and the Provincial Societies do not have any relationship to US organizations. All revenue and expenses reported from the US are not applicable to any of our Canadian ALS Provincials Societies or ALS Canada.

Dear Canadians,

The outpouring of support you have shown for the ALS community, ALS Canada and the ALS Provincial Societies has truly been transformative. Thanks to you, Amyotrophic Lateral Sclerosis (ALS), is no longer an unknown disease.

It is with a profound sense of gratitude we share that your donations have surpassed $10 million. 

Thank you Canada!