News
Our news, and news from Canada and around the world about new therapies, clinical trials, research and patient-led advocacy.
December 13, 2024
United on Parliament Hill: Advocates and NHL Legends Rally for ALS Awareness
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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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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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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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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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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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