Dear ALS Community,

We are pleased to advise you that the Government of Canada has announced the activation of the extension of the Compassionate Care Benefit (CCB) from six to 26 weeks. Effective January 3, 2016, caregivers can now claim up to $13,624 in benefits, where previously it was $3,144. We hope this announcement will now relieve some of the financial burden related to this disease.  

Since 2013, ALS Societies across Canada have been advocating for an extension of the CCB from six to 35 weeks and for eligibility upon diagnosis. Although this is a great step forward, we recognize that better support for ALS families is urgently needed. We will continue to lobby and influence the federal government to continue to make more meaningful changes towards the CCB to reach the goal towards the full 35 weeks.

This recent announcement indicates that our voices were heard and the government responded. Together, we will stay the course, championing to help families all across Canada fighting ALS. 

For the full announcement made by the Government of Canada, please read here: 

For more information around the eligibility requirements for the CCB through the Government of Canada’s website, please read here: .

ALS Canada 


April 21, 2015, the Government of Canada announced that the compassionate care benefit may be  extended from six to 26 weeks. It was announced in the budget for an anticipated implementation in 2016 (  In 2016, caregivers may have up to $13,624 they can access, where previously it was $3,144. If the Government of Canada implements the extension, this would be a big step forward in helping caregivers take care of their loved ones in the comfort of their home. 

Learn more about the compassionate care benefit through the Government of Canada's site:



MARKHAM April 21, 2015/CNW – ALS Canada is pleased the Government of Canada has decided to  extend the Compassionate Care Benefit (CCB) from 6 to 26 weeks – a benefit that will directly provide much needed financial assistance to Canadian families caring for a loved one with the terminal disease, ALS or amyotrophic lateral sclerosis. 

This commitment by the Government of Canada represents significant progress and will make a substantial impact on Canadians who are at their most vulnerable financially and emotionally. The increase means up to $13,624 for caregivers taking care of a loved one with ALS.  Average costs for a working Canadian family dealing with an ALS diagnosis are $150,000 - $250,000 during the short life span of 2 to 5 years, due to the needs associated with the debilitating physical effects of this neurodegenerative disease. 

ALS Canada has been advocating since 2013 for an extension of the CCB for families living with ALS from 6 to 35 weeks and eligibility upon diagnosis. While ALS Canada supports an extension to 26 weeks as a positive step forward, better support for ALS families is urgently needed.   

“We thank the federal government for their commitment to the extension of the CCB . The increase of the CCB to 26 weeks from its original 6 weeks means our voices are being heard and we are making progress,” said Tammy Moore, CEO ALS Canada. “However, we will continue working with Members of Parliament and the Government of Canada to improve access to the CCB to ensure this benefit adequately supports caregivers of Canadians living with ALS.  These changes are imperative given the significant financial strain that ALS causes for both patients and families and the hardships associated with an ALS diagnosis.”

ALS is a disease that is nicknamed the ‘bankruptcy disease’ because of the  emotional, physical and financial toll as the disease progressively paralyzes the body until the individual affected with ALS eventually succumbs to respiratory failure and dies. With every progression of the disease, the costs to maintain an appropriate level of care and quality of life are significantly financially detrimental to an ALS family and an adequate and appropriate level of compassionate care benefits should be provided.