ALS News

ALS Canada and Brain Canada award $4.5 million in research funding; nearly $20 million invested in ALS research in Canada since 2014’s Ice Bucket Challenge

Classification: Volunteer Position, 8 to 15 hours per week – flexible during office hours, 3 months with potential for extension

Location: ALS Canada is located at: 

393 University Avenue, Suite 1701
Toronto, Ontario,  M5G 1E6

Dr. Jeehye Park, Dr. Veronique Belzil, and Dr. Kessen Patten

Three young investigators are pursuing ALS research thanks to funds raised through the Ice Bucket Challenge and matched by Brain Canada with financial support from Health Canada

The generosity of Canadians has helped three early-career researchers to make ALS the focus of their work in the country’s labs and academic institutions. The research funding, which totals more than $1 million, has been awarded through the ALS Canada Research Program and Brain Canada as a result of money raised through the Ice Bucket Challenge.

WALK for ALS early results: $3.9 million (and counting!) raised nationwide

Throughout the spring, summer and fall of 2016, Canadians showed they care about beating ALS, the devastating neuromuscular disease that gradually paralyzes people and takes away their ability to move, talk, swallow, eat and eventually breathe.

Our hearts are heavy as we say good-bye to Mauril Bélanger, MP for Ottawa-Vanier. Diagnosed with ALS in late 2015, he partnered with the ALS Societies across Canada and took on the role of National Honorary Spokesperson for the 2016 WALK for ALS.

“Every August until a cure. Because we have to.”

These words from Ice Bucket Challenge co-founder Pat Quinn speak to the importance of raising money for ALS research. As we approach the second anniversary of the Ice Bucket Challenge, we are already seeing its impact: last week, researchers who were funded through Ice Bucket Challenge donations announced that the gene NEK1 has been found to play a role in the development of ALS.

July 28, 2016 – Earlier this week researchers announced that the gene NEK1 has been found to play a significant role in the development of amyotrophic lateral sclerosis (ALS). This landmark discovery is the result of an 11-country research collaboration that was funded through the Ice Bucket Challenge. The research team included 3 Canadians, one of whom was directly funded by the ALS Society of Canada for their work during this discovery.

Thirty remarkable days. Thirty inspirational stories. Thirty chances to seize the days. That’s what ALS awareness month is all about. From fundraising walks in communities across the country to breathtaking walks on the brink at Edgewalk around the top of the CN tower, this June we’re pushing the limits and challenging everyone to seize the day for ALS Canada.

MARKHAM, ON, April 19, 2016 /CNW/ - Six months ago, Liberal MP Mauril Bélanger was running in the federal election, continuing his dedication of over 20 years to serving his constituents in the riding of Ottawa-Vanier. His life changed November 2015, when he was diagnosed with the terminal disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's. Although ALS has taken away his ability to speak, it has not taken away his voice or commitment to help others.

First ALS Canada Clinical Management Grant to Support Exploration of Cannabinoids on Quality of Life

Community engagement plays a really important role in fundraising for ALS Canada. We are grateful for everyone who gets involved and dedicates their time to hosting BBQ’s, block parties, dance-a-thons, and Ice Bucket Challenges! We could not do the work we do, without your support.

Meet Kinga Repic.

ALS Canada: What kind of community events have you helped organize?

Caregiver Information Sessions

How to deal with the unique and individual journey that caregivers and loved ones experience when supporting those living with ALS. 

In Person:

Wednesday April 20th 2016
7 pm – 9pm
Olivet Baptiste Church
36 Margueretta St
Toronto, ON M6K 2P5
RSVP by Monday April 18th 2016

Webinar:

1988. At the office. A young independent redhead grabs Jocelyn’s attention immediately.

She emits a contagious “joie de vivre” that instantly seduces the young man. Chantal, on the other hand, was charmed by Jocelyn’s ability to listen and his sincere consideration for everyone around him. After almost 23 years of marriage and a daughter named Maya, their love has never been so strong. Their secret? “It’s in the little things: a look, a gesture, a spontaneous hug, a compliment, a morning smile and tenderness. These are all elements that keep our flame alive,” confides Chantal.

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.  

The Canada Revenue Agency has a great video series on charitable giving and as a donor what you should look for when donating to a charity. 

In a few weeks, we will be celebrating and welcoming in the New Year. However, there is still time to give a gift and receive a tax receipt before year end. Your deadline to submit a donation is Dec 31, 2015

To ensure you receive your charitable tax benefit for 2015,  when donating to ALS Canada, here are a few tips :

Last Christmas I was playing hockey. Now I need help to stand up.
John Hamm, diagnosed with ALS in 2014

One of John Hamm’s favourite holiday traditions is playing pond hockey with his three kids. But this year, he won’t be strapping on skates.

This holiday season, John’s wife Cathy will bundle him up in warm clothes and, together with son Jake, pull John out to the pond on a toboggan so he can watch. 

Today is Giving Tuesday. On this very special day of giving from the heart, I hope you’ll give the most precious gift of all — the gift of hope. 

Right now, approximately 3,000 Canadians are living with ALS (Amyotrophic Lateral Sclerosis) — a degenerative disease that quickly and progressively steals a person’s mobility, speech and eventually the ability to breathe. Today, most people live only two to five years after a diagnosis. 

Please make your Giving Tuesday gift to the ALS Society of Canada. 

A year ago today, the team at ALS Canada and members of the ALS Community were in Ottawa announcing the generosity of Canadians who supported ALS through the Ice Bucket Challenge, which allowed ALS Canada to sign a partnership with Brain Canada for matching dollars for ALS research. 

We will be making a historic research announcement tomorrow! Watch for our upcoming announcement.

 

 

We are very pleased to announce that Lisa Droppo has joined ALS Canada as Vice President Client Services!

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