ALS News

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 early November 2014.

ALS society lobbying for extended caregiver benefit in budget 2015

NEWS | YAEL BERGER
PUBLISHED: THURSDAY, 10/16/2014 5:33 PM EDT

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. 

Hello.

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!

Canadians generous support to the Ice Bucket Challenge for ALS has almost reached $10 million in donations. In the scope of our organizations and the need to fund research it is not overwhelming.  ALS Canada’s annual budget is $7M and collectively with the Provincial Societies across the country, the annual budgets are $14M.

Over the past month, we have received many questions regarding ALS Research and the ALS Canada Research Program. To keep you informed, we pulled together the top questions that are coming through to ensure you are informed on ALS Canada and our funding program. If you have any further questions that you don’t see below, please do not hesitate to reach out to me at dt@als.ca Thank you Canada, for your continued support!

Dear Canadians,

We have received great questions asking where your funds will be directed from the Ice Bucket Challenge for ALS. Thank you for your questions and giving us an opportunity to share our charitable purpose that is defined within a comprehensive strategic plan and to present our historical financial performance.

The staff @alscanada accepted the #icebucketchallenge from our Interim CEO, Tammy Moore. We now challenge YOU to help raise awareness for ALS and support families living with this disease. Donate at www.als.ca/donate or set up your own personal Ice Bucket Challenge page at als.ca/icebucketchallenge

Check on.fb.me/1nN15WG to watch our video.

 

 

 

Dousing your friends and family with ice cold water is creating a media storm around North America, raising awareness for ALS. The‪#‎icebucketchallenge‬, inspired by Boston College baseball player Pete Frates, who is living with ALS, has placed the challenge to anyone who wants to get involved.

Have you had your own #icebucketchallenge? Stay tuned for @alscanada staff who is taking on the challenge Monday August 11! Donate at http://bit.ly/1pGEGw4

 

ALS Canada Bridge Grants are a critical part of ALS Canada’s Research Program. Designed to keep top scientists focused on ALS and to maintain support for top ranked ALS projects in Canada, Bridge Grants are a partnership with the Canadian Institutes of Health Research (CIHR) where ALS Canada provides $100,000 for one year to top ranked ALS research. 

ALS Canada’s 2nd annual, ALS Charity Golf Classic will once again be held at the prestigious Angus Glen Golf Course, home to the 2002 and 2007 Canadian Open. 

Thanks to your support, last year, 144 golfers came out to play and raised over $85,000 to support people living with ALS and fund ALS research. We’re back with a new goal – to raise $105,000.  To help us reach this goal, ALS Canada welcomes Maple Leafs Coach Randy Carlyle, who will be one of the players in this year’s game.  

It is with great pleasure that we can finally announce the launch of the video series Tax Measures for Persons with Disabilities. This video series is intended to help individuals with a disability, or the people who support them, and assist them in finding answers to some of the key questions related to tax measures that may apply to them. Some of the topics covered are: the Disability Tax Credit and the disability amount; medical expenses; credits available to caregivers;  and the Registered Disabilities Savings Plan (RDSP), to name a few.

Our father Tom Burney was diagnosed in August 2012. In 1986, Tom lost his wife to cancer, leaving him the lone parent of three young girls, ages 11, 8 and 2. In the 26 years to follow, Tom showed strength, courage and unbelievable adversity, providing the love of a mother and a father to his young girls, putting them before everything.

Written by Tim Baines. Ottawa Sun

Brian Parsons knows his life clock is ticking -- one day, maybe soon, he will be choked out -- suffocated. It's a horrible way to die.

He slurs to the point where he's been mistaken for being drunk. Every day there are tears he's able to bury almost as quickly as they come. There's nothing wrong with his brain, but the disease -- ALS, Amyotrophic lateral sclerosis -- is slowly taking over his body.

June Rumball is my Aunt, my Mentor, and my Friend. We are very close. For me watching her quickly... lose most of her independence as ALS debilitates her knowing there is nothing I can do is hard.

Can you tell us about yourself?

I was diagnosed in 2011, with bulbar onset. I had recently lost my job as an Account Manager at a bank and had gone back to school to be a Mortgage Broker. I had finished the schooling and all set to start my new career, when we first noticed issues with my speech. I was diagnosed fairly quickly, and having had all my insurance through work, both life and disability insurance, I had none when I was diagnosed.

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