ALS News

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.

 

Cytokinetics, Incorporated (Nasdaq: CYTK) announced today the top-line results of BENEFIT-ALS (Blinded Evaluation of Neuromuscular Effects and Functional Improvement with Tirasemtiv in ALS).

Cytokinetics, Incorporated announced this morning that the Phase IIb clinical trial of tirasemtiv did not achieve a significant benefit in individuals with ALS. Mixed results were seen with some of the measures (respiratory and skeletal muscle function), but the overall rating scale of ALS functioning (ALSFRS-R) was not significantly improved.

The Board of Directors of ALS Canada announces that Lindee David will be leaving her position as Chief Executive Officer effective May 16, 2014. The Board has appointed Tammy Moore as Interim CEO to ensure a smooth transition while the Board conducts a search for a permanent CEO.

PowerSource 2014: Making a Difference for Families and Friends Living with ALS

In our Spring Newsletter, we share your stories, update you on ALS research and tell you about our upcoming fundraising events. 

Thank you to everyone who submitted their stories and helped put the newsletter together.

The ALS Canada Team.

 

April 6-12 is National Volunteer Week in Canada, and ALS Canada would like to both congratulate and celebrate with our volunteers. 

We cannot thank you enough for:

Your Valuable Time, Your Advocacy, Your Smiles, Your Enthusiasm, Enduring your Paper Cuts, Your Positive Attitude, Your Effort, Your Governance, Your Listening, Your Ideas, Your Dedication, Your Fearlessness, Your Fundraising, Your Wisdom, Your Caring, Your Patience, Delivering the message about ALS and Your Endurance

Volunteer Profile

Melanie York: Changing Perceptions and Breaking down Barriers

Melanie York is an advocate. For the past four years, she has been a voice of reckon for ALS Canada voluntarily spearheading active roles as a board member, contributor to the marketing communications working group, member of the ALS Canada Scientific Medical Advisory Council and as the brave chairperson to the ALS support groups at Sunnybrook hospital. 

The 2014 Bombardier Plane Pull for ALS Canada is a show of human strength – the physical strength of the participants and the mental and spiritual strength of the individuals who fight every day with ALS, also known as Lou Gehrig’s disease. Don’t miss out on this unique fundraising event!

When a family member was diagnosed with ALS, Randy Carlyle joined forces with ALS Canada to raise awareness and funds for education, equipment and research to find a cure. As the coach of the Toronto Maple Leafs, Randy knows the importance of teamwork. A community that works collaboratively and is united towards achieving one goal makes a winning combination to fight against ALS.

An exclusive look at ALS Canada's PSA with Toronto Maple Leafs Coach Randy Carlyle. 

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