ALS News

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.

Writer Kate Lunau, from Macleans Magazine, wrote an article featuring our board member and client Melanie York this past March. We are re-posting this article for #ALSAwarenessMonth. 

Share your story on who inspires you within the ALS community @ALSCanada

#alshero   Melanie York. 

http://www.macleans.ca/authors/kate-lunau/understanding-als/
 

My name is Cherrie-Marie Chiu and my brother Christopher was diagnosed with ALS two and a half years ago. Christopher was only 32 years old when he was diagnosed. It started with him stubbing his toe while playing volleyball and soon his leg was giving ...way. The testing began in the summer and a few months later he was diagnosed with amyotrophic lateral sclerosis.

In 2011, David Tilson, Member of Parliament for Dufferin-Caledon introduced a private member's bill designating June ALS Awareness Month with the mission to spread the word about ALS and get Canadians engaged to show support for clients and families living with ALS. 

This month, thousands of Canadians will be participating in the WALK for ALS taking place across 90 communities across Canada. The goal is to raise $4 million nationally and $1.775 million in Ontario.

On Wednesday May 28th, ALS Canada hosted a seminar to a variety of organizations and professions to speak about the status of ALS research, respiratory management, current clinical management strategies, alternative medical management, pharmaceutical management and invasive vs. non-invasive management.

Legacies of people who have succumbed to the terminal disease, Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, continue to be remembered as ALS Canada bestowed awards to a new generation of community members who are making a difference in raising awareness and funds for the ALS Community.   

This  past weekend, ALS Canada recognized individuals and corporations for their dedication and commitment to the cause in 2013. Read the volunteer stories here.

Arthur J. Hudson Translational Team Grant

The 2014 vision of ALS Canada is “Within ten years, ALS will be a treatable disease.” To that end, ALS Canada's Strategic Plan for Research (2014-2017) established the goal to develop, through a national network, at least one novel therapeutic strategy to slow the progression of ALS. As a mechanism to achieve that goal, the Arthur J. Hudson Translational Team Grant has been established.

 

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