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Our news, and news from Canada and around the world  about new therapies, clinical trials, research and patient-led advocacy.

September 5, 2024

The Unseen Heroes: Understanding and Supporting ALS Caregivers

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August 9, 2024

Tofersen and the Future of ALS: A New Genetic Frontier

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May 15, 2024

pALS & ALSAC member Matt Brown interview

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May 15, 2024

ALS Super Fund, backed by Canadian NHL teams, hits $1 Million With Charitable Impact’s Cause Fund

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December 14, 2023

United to #EndALS: Canadian NHL Teams Unite to Support the ALS Super Fund

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December 14, 2023

Drug Availability Without Access – a new pALS written paper

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December 14, 2023

ALSAC at Canadian Rare Disease Conference

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October 29, 2023

pALS Dave Dodds: happy to stand up and shout about ALS

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BC Man's relentless battle against ALS
October 26, 2023

BC Man’s Relentless Battle Against ALS

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September 29, 2023

Early ALS Detection with AI

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ALS Action Canada Media Release
November 4, 2022

Availability without accessibility: ALS Action Canada calls on Canada to do better and make Albrioza available to more than 7% of people living with ALS

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June 23, 2021

Man cycling from Milton to Leith for ALS, which killed father last year

Owen Sound Sun Times

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June 23, 2021

FROM DISBELIEF TO ADVOCACY: A SON RESPONDS TO HIS FATHER’S ALS DIAGNOSIS

DYING TO MEET YOU

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June 20, 2021

ALS patient pulls all-night walk in race for better treatments

Ottawa Citizen

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June 18, 2021

Kamloops family impacted by ALS diagnosis keeping humour and positivity at the forefront

CFJC Today

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June 17, 2021

Former Telus lawyer Greg Gowe launches fundraising initiative for ALS Action Canada

Canadian Lawyer

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June 13, 2021

Raising funds for ALS

Castanet.net

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June 11, 2021

“I don’t want anybody to feel sorry for me”: How Mark Kirton is fighting ALS with the hockey world behind him

Peterborough Petes

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June 2, 2021

MLB recognizes Lou Gehrig Day for ALS Awareness Month

CTV News

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June 2, 2021

Steve Gallagher, of St. Catharines, was diagnosed nearly two years ago with ALS. He hopes people will support the June 20 Walk to End ALS. LIFE Fighting Lou Gehrig’s disease: Steve Gallagher is in it for life

St. Catharines Standard

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June 1, 2021

SIMMONS: Former NHLer Mark Kirton shares brave journey battling ALS

Toronto Star

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May 27, 2021

Former Smithers resident loses fight to ALS

BC Local News

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May 26, 2021

ALS Action Canada urges the Government of Alberta and Health Canada to swiftly approve new ALS drug therapeutic AMX0035

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May 21, 2021

People affected by ALS applaud provincial funding to support local clinical trials, research centre

CBC News

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May 20, 2021

ALS Action Canada urges the Government of Manitoba and Health Canada to swiftly approve new ALS drug therapeutic AMX0035

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May 20, 2021

ALS Action Canada urges the Government of Nova Scotia and Health Canada to swiftly approve new ALS drug therapeutic AMX0035

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May 20, 2021

ALS Action Canada urges the Government of Ontario and Health Canada to swiftly approve new ALS drug therapeutic AMX0035

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May 20, 2021

ALS Action Canada urges the Government of British Columbia and Health Canada to swiftly approve new ALS drug therapeutic AMX0035

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May 13, 2021

‘We love you, Ron!’ Former Surrey fire chief supported in battle with ALS

Global News

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May 6, 2021

‘Families with ALS need your help’: Tommy Chong lends support to advocacy group looking to end disease

North Shore News

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May 5, 2021

ALS Action Canada urges the Government of Canada and Health Canada to swiftly approve new ALS drug therapeutic AMX0035

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May 1, 2021

From Lawyer to Fighter: How I Became an Advocate for ALS

Advocate

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April 26, 2021

North Vancouver man challenges B.C. residents to donate portion of their ICBC rebate to ALS research

CTV News Vancouver

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April 21, 2021

‘ALS has taken so many things away’: Kelowna patients speak to need for clinical trials in B.C.

Global News

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April 21, 2021

North Vancouver ALS patient says hope needed in form of clinical trials in B.C.

North Shore News

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April 17, 2021

Manitoba Health ordered to reimburse man with ALS for virtual appointment with out-of-country specialist

CBC

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March 30, 2021

ALS Patients Fight for the Right to Try and Patient-Centric Trial Design

BioSpace

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March 23, 2021

‘I have been given a gift and extra time’: Flames assistant GM Chris Snow battles with ALS

The Globe and Mail

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March 22, 2021

B.C. men use their experience to help future ALS patients

Global News

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March 18, 2021

‘Hard to mentally grasp this situation’: Oakville man, 49, and drummer for Burlington band, diagnosed with ALS and family needs help

Toronto Star

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March 18, 2021

Amylyx Pharmaceuticals to Present New Long-Term Data From the Pivotal Centaur Trial in ALS

AMYLYX

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March 12, 2021

Further government support needed for ALS funding in B.C.

BC Liberal Caucus

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March 11, 2021

MPs and ALS patients challenge government agencies to review new ALS drugs in six months or less

Hill Times Research

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March 11, 2021

ALS patients, families urge faster approval for treatments

News 1130

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March 10, 2021

Dr. Sanjay Kalra on finding a neuroimaging biomarker for ALS: Challenge Accepted

Gateway

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March 10, 2021

Cariboo-Prince George MP Todd Doherty looks to speed up approval for new ALS treatments

The Williams Lake Tribune

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ALS Action Canada Media Release
March 10, 2021

ALS Action Canada issues media release urging Health Canada and the provinces to swiftly approve AMX0035

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March 9, 2021

Maple Ridge family needs help after ALS diagnosis

Maple Ridge-Pitt Meadow News

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March 9, 2021

Amylyx Pharmaceuticals Plans Regulatory Filing of Amx0035 for the Treatment of Als in Canada

AMYLYX

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March 4, 2021

Major League Baseball to have annual Lou Gehrig Day on June 2

ESPN

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March 3, 2021

A new ALS drug is extending patients’ lives by months. It’s giving hope for those facing such a ‘brutal illness.’

USA Today

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March 1, 2021

Don Reilly, drummer for Burlington’s Crowe, fighting ALS

A Journal of Musical Things

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February 24, 2021

ALS Action Canada group ropes in political leaders

Burns Lake Lakes District News

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February 18, 2021

Former Burns Lake resident advocates for better ALS treatment in B.C.

My Bulkley Lakes Now

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February 10, 2021

‘I want to come home, but there are no treatment options in B.C.,’ says man diagnosed with ALS

Burns Lake Lakes District News

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February 7, 2021

Who Was That Masked Man? These Superheroes Fight ALS

Health Insight

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February 7, 2021

“What Can I Do?”

Sara's Life with ALS

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February 7, 2021

Egan: While she died of ALS, Carol Skinner’s spirit would not be conquered

Ottawa Citizen

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February 3, 2021

BC MLAs Susie Chant (NDP) and Karin Kilpatrick (Lib) work together to support ALS Action Canada

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January 30, 2021

COVID-19 vaccines show what’s possible. Now, former Obama staffer says it’s time to take that drive toward terminal illnesses like ALS.

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January 27, 2021

Hope through ALS clinical trials needed in the province, says B.C. man

Burns Lake Lakes District News

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January 22, 2021

NDP MP Heather McPherson joins federal ALS Caucus

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January 18, 2021

Opinion: Use COVID pause to reconsider drug-price regulation

Financial Post

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January 17, 2021

Breakthrough discovery reveals way of reversing Motor Neurone Disease damage

Herald

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January 8, 2021

Calls for ALS clinical trials in B.C.

CityNews 1130

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January 5, 2021

BC Man calling for Canada to approve ALS therapy treatments

CTV News

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January 3, 2021

ALS patients and advocates say Canada needs better access to new treatments

CBC News

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December 24, 2020

Canadians with ALS fear lengthy wait for new, potentially life saving drugs

CTV News Montreal

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December 23, 2020

Dr. Angela Genge, Director of the ALS Global Centre for Excellence at the Montreal Neurological Hospital, calls for more urgency in approving new ALS treatments

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December 18, 2020

Fundraising underway for former Smithers resident diagnosed with ALS

Burns Lake Lakes District News

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December 18, 2020

ALS Action Canada meets with federal Liberal Party’s Pacific Caucus

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December 18, 2020

SNOWY STRONG Funds Distributed $200,000 Donated to Sunnybrook Health Sciences Centre

News Release

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ALS Action Canada Media Release
December 17, 2020

Canadians with ALS Need Urgent Access to Promising Treatments Available Worldwide

Media Release

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December 16, 2020

Investigational drug SLS-005 (Trehalose) enters HEALEY ALS Platform Trial

Press Release

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December 12, 2020

Pandemic has made years of inadequate care worse, says extended care resident’s sister

CBC News

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December 1, 2020

Roadmap to a cure for ALS

110º Magazine

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November 30, 2020

Flames assistant GM Snow in ‘great spirits’ after surgery

TSN

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November 30, 2020

ALS Action Canada presents it ALS plan to MPs Tamara Jansen, Kenny Chiu, Kerry-Lynne Findlay and Tako Van Popta

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November 23, 2020

Co-founder of viral ALS Ice Bucket Challenge dies at 37

CTV News

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November 23, 2020

Donations pour in after local man diagnosed with ALS

BlackburnNews.com

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November 23, 2020

U of T Researchers Identify an Eye Signature for ALS

Temerty Faculty of Medicine, University of Toronto

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November 19, 2020

The Expanding Landscape of Therapeutic Targets In ALS Clinical Trials

Nicolas J. Maragakis, Johns Hopkins Medicine

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November 18, 2020

A Chippewa Secondary School graduate is helping lead national research on ALS

BayToday.ca

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November 8, 2020

Petition launched calling on Canada’s Health Minister to initiate pilot program to speed up approval process for new ALS therapies

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November 4, 2020

Jambaree Donates ALS / SLA Action Canada Website

Press Release

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October 30, 2020

It’s Official! All 30 Major League Baseball Teams Endorse League-Wide Lou Gehrig Day!

Press Release

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October 29, 2020

US House and Senate introduce Accelerating Access to Critical Therapies for ALS Act (ACT for ALS)

Press Release

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October 28, 2020

BRAUN: Bureaucrats will stop game-changing meds from coming here

Toronto Sun

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October 21, 2020

Patients, health organizations band together to bring breakthrough treatments to Canada sooner

Global News

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October 21, 2020

Toronto Blue Jays support annual, league-wide “Lou Gehrig Day” to help defeat ALS

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October 17, 2020

Deane Gorsline was diagnosed with ALS at 29 and is now fighting to access new treatments – watch a video about him here

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October 16, 2020

ALS Action Canada meets with BC NDP candidates from Vancouver’s North Shore

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October 15, 2020

BC goes to the polls on October 24; ALS Action Canada still waiting for response to letter

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October 15, 2020

ALS Action Canada meets with CF Get Loud Canada to discuss advancing Canada’s “Rare Disease Strategy”

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October 12, 2020

ALS Action Canada members takes part in pharmaceutical industry round-table

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October 5, 2020

ALS Action Canada meets with BC Liberal Party candidates from Vancouver’s North Shore

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September 24, 2020

A Windsor mom fights back against ALS diagnosis

Our Windsor

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September 15, 2020

ALS Action Canada calls for national leadership from BC for ALS treatment options, care and research

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September 8, 2020

ALS Action Canada meets with federal ALS Caucus members

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September 7, 2020

Pandemic rules keeping terminally ill man from seeing family

CBC News

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September 2, 2020

2 College Students Dreamed Up an A.L.S. Treatment. The Results Are In.

New York Times

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August 25, 2020

B.C. announces new coverage for ALS drugs, and funding towards centre of excellence

Maple Ridge Pitt Meadows News

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August 12, 2020

A new approach to ALS drug trials gives patients hope

Boston Globe

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August 10, 2020

ALS Action Canada’s submission on the “Proposed Alignment of CADTH Drug Reimbursement Review Process”

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August 8, 2020

ALS Action Canada calls on Major League Baseball and Toronto Blue Jays to support annual Lou Gehrig Day

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August 6, 2020

ALS Action Canada’s submission to the Federal Government for the 2021 Budget

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August 4, 2020

ALS Action Canada’s submission to the federal Patent Medicine Prices Review Board

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July 22, 2020

Tofersen Safe, Appears to Slow Disease Progression in SOD1 ALS Patients, Phase 1/2 Trial Shows

ALS News Today

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July 16, 2020

Larry Uteck entering Canadian Football Hall of Fame

CBC

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July 15, 2020

Life in long-term hospital “unbearable”: Montreal man with ALS

Montreal Gazette

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July 3, 2020

ALS Action Canada meets with Francis Drouin, Chair of federal ALS Caucus

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June 19, 2020

Trick-shot challenge shines spotlight on Flames exec Chris Snow in fight with ALS

Calgary Sun

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June 18, 2020

North Van family living with ALS advocates for more research

North Shore News

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June 12, 2020

BC Government provides “non response” response to concerns of 15 BC ALS families

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June 10, 2020

ALS Action Canada meets with MP Kerry-Lynne Findlay, PC, Q,C, (South Surrey – White Rock)

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June 5, 2020

Staying positive after a shattering ALS diagnosis

Belleville Intelligencer

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June 4, 2020

Hope for an ALS cure for Squamish ski instructor, and others like him

Squamish Chief

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March 19, 2020

Star Trek’s Kenneth Mitchell Opens Up About Continuing His Acting Career After ALS Diagnosis

People.com

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January 29, 2020

This Ontario teen was 12 when she became a caregiver. She’s not alone .

CBC News

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January 27, 2020

ALS: Quebec’s first philanthropic research chair – $1 million to advance research in Amyotrophic Lateral Sclerosis at the INRS

Institut National de la recherche scientifique (INRS)

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October 27, 2019

Former Peterborough Pete Mark Kirton now facing off against ALS

Peterborough Examiner

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October 25, 2019

How one man is speaking up for ALS patients, even without his voice

CBC Radio

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October 23, 2019

“Dance Me To The End: Ten Months and Ten Days with ALS” by BC author, Alison Acheson

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September 22, 2019

Paralyzed author writes about loss and grief in book written with his eyes

CTV News

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September 19, 2019

PJ Stock Competes in The Battle of the Blades in support of ALS

Press Release

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September 18, 2019

Sean M. Healey & AMG Center for ALS at Mass General launches first ALS Platform Trial with 5 promising drugs

Press Release

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August 9, 2019

We need a public outcry’: B.C. father with ALS ends life after struggle to stay at home

CTV News

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August 8, 2019

Former NHL’er, Aaron Volpatti finishes Ironman for ALS

Revelstoke Review

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May 21, 2019

Former Kelowna hockey player dies after battle with ALS

Kelowna Capital News

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October 4, 2018

Ottawa approves drug shown to slow down deadly neurological disease ALS

CBC News

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June 12, 2018

Montreal neurologist says doctors must be better about early detection of ALS

Montreal Gazette

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June 7, 2018

ALS has devastating effect on families

The Chronicle Herald

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March 29, 2018

ALS: Canadian patients eligible for inclusion in U.S. clinical trials

Montreal Gazette

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March 21, 2018

Life takes an unpredictable turn for well-known South Okanagan baker

Penticton Western News

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November 19, 2017

The Joe Thornton And Steve Barber Story | Hometown Hockey

SPORTSNET | Hometown Hockey

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April 21, 2017

The New Pornographers’ Kathryn Calder Recalls Her Mother’s Terminal Illness in a Documentary

Medium

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February 21, 2017

BrainStorm Seeking Approval To Distribute NurOwn® in Canada

Media Release

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February 21, 2017

BrainStorm seeks early approval for ALS stem cell treatment in Canada

CTV Moring News

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September 25, 2016

Dean Stock, former Halifax Mooseheads’ captain, dies after battle with ALS

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August 16, 2016

Mauril Bélanger, longtime Ottawa-Vanier MP, dies of ALS at 61

CBC News

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May 4, 2015

“Hold On, Let Go: Facing ALS with courage and hope”, by Nadine Sands

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March 11, 2014

Understanding ALS

Maclean's

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