News
Our news, and news from Canada and around the world about new therapies, clinical trials, research and patient-led advocacy.
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pALS & ALSAC member Matt Brown interview
15.05.24
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ALS Super Fund, backed by Canadian NHL teams, hits $1 Million With Charitable Impact’s Cause Fund
15.05.24
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United to #EndALS: Canadian NHL Teams Unite to Support the ALS Super Fund
14.12.23
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Drug Availability Without Access – a new pALS written paper
14.12.23
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ALSAC at Canadian Rare Disease Conference
14.12.23
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pALS Dave Dodds: happy to stand up and shout about ALS
29.10.23
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BC Man’s Relentless Battle Against ALS
26.10.23
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Early ALS Detection with AI
29.09.23
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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
04.11.22
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Man cycling from Milton to Leith for ALS, which killed father last year
Owen Sound Sun Times
23.06.21
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FROM DISBELIEF TO ADVOCACY: A SON RESPONDS TO HIS FATHER’S ALS DIAGNOSIS
DYING TO MEET YOU
23.06.21
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ALS patient pulls all-night walk in race for better treatments
Ottawa Citizen
20.06.21
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Kamloops family impacted by ALS diagnosis keeping humour and positivity at the forefront
CFJC Today
18.06.21
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Former Telus lawyer Greg Gowe launches fundraising initiative for ALS Action Canada
Canadian Lawyer
17.06.21
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Raising funds for ALS
Castanet.net
13.06.21
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“I don’t want anybody to feel sorry for me”: How Mark Kirton is fighting ALS with the hockey world behind him
Peterborough Petes
11.06.21
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MLB recognizes Lou Gehrig Day for ALS Awareness Month
CTV News
02.06.21
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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
02.06.21
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SIMMONS: Former NHLer Mark Kirton shares brave journey battling ALS
Toronto Star
01.06.21
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Former Smithers resident loses fight to ALS
BC Local News
27.05.21
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ALS Action Canada urges the Government of Alberta and Health Canada to swiftly approve new ALS drug therapeutic AMX0035
26.05.21
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People affected by ALS applaud provincial funding to support local clinical trials, research centre
CBC News
21.05.21
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ALS Action Canada urges the Government of Manitoba and Health Canada to swiftly approve new ALS drug therapeutic AMX0035
20.05.21
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ALS Action Canada urges the Government of Nova Scotia and Health Canada to swiftly approve new ALS drug therapeutic AMX0035
20.05.21
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ALS Action Canada urges the Government of Ontario and Health Canada to swiftly approve new ALS drug therapeutic AMX0035
20.05.21
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ALS Action Canada urges the Government of British Columbia and Health Canada to swiftly approve new ALS drug therapeutic AMX0035
20.05.21
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‘We love you, Ron!’ Former Surrey fire chief supported in battle with ALS
Global News
13.05.21
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‘Families with ALS need your help’: Tommy Chong lends support to advocacy group looking to end disease
North Shore News
06.05.21
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ALS Action Canada urges the Government of Canada and Health Canada to swiftly approve new ALS drug therapeutic AMX0035
05.05.21
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From Lawyer to Fighter: How I Became an Advocate for ALS
Advocate
01.05.21
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North Vancouver man challenges B.C. residents to donate portion of their ICBC rebate to ALS research
CTV News Vancouver
26.04.21
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‘ALS has taken so many things away’: Kelowna patients speak to need for clinical trials in B.C.
Global News
21.04.21
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North Vancouver ALS patient says hope needed in form of clinical trials in B.C.
North Shore News
21.04.21
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Manitoba Health ordered to reimburse man with ALS for virtual appointment with out-of-country specialist
CBC
17.04.21
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ALS Patients Fight for the Right to Try and Patient-Centric Trial Design
BioSpace
30.03.21
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‘I have been given a gift and extra time’: Flames assistant GM Chris Snow battles with ALS
The Globe and Mail
23.03.21
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B.C. men use their experience to help future ALS patients
Global News
22.03.21
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‘Hard to mentally grasp this situation’: Oakville man, 49, and drummer for Burlington band, diagnosed with ALS and family needs help
Toronto Star
18.03.21
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Amylyx Pharmaceuticals to Present New Long-Term Data From the Pivotal Centaur Trial in ALS
AMYLYX
18.03.21
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Further government support needed for ALS funding in B.C.
BC Liberal Caucus
12.03.21
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MPs and ALS patients challenge government agencies to review new ALS drugs in six months or less
Hill Times Research
11.03.21
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ALS patients, families urge faster approval for treatments
News 1130
11.03.21
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Dr. Sanjay Kalra on finding a neuroimaging biomarker for ALS: Challenge Accepted
Gateway
10.03.21
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Cariboo-Prince George MP Todd Doherty looks to speed up approval for new ALS treatments
The Williams Lake Tribune
10.03.21
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ALS Action Canada issues media release urging Health Canada and the provinces to swiftly approve AMX0035
10.03.21
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Maple Ridge family needs help after ALS diagnosis
Maple Ridge-Pitt Meadow News
09.03.21
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Amylyx Pharmaceuticals Plans Regulatory Filing of Amx0035 for the Treatment of Als in Canada
AMYLYX
09.03.21
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Major League Baseball to have annual Lou Gehrig Day on June 2
ESPN
04.03.21
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A new ALS drug is extending patients’ lives by months. It’s giving hope for those facing such a ‘brutal illness.’
USA Today
03.03.21
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Don Reilly, drummer for Burlington’s Crowe, fighting ALS
A Journal of Musical Things
01.03.21
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ALS Action Canada group ropes in political leaders
Burns Lake Lakes District News
24.02.21
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Former Burns Lake resident advocates for better ALS treatment in B.C.
My Bulkley Lakes Now
18.02.21
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‘I want to come home, but there are no treatment options in B.C.,’ says man diagnosed with ALS
Burns Lake Lakes District News
10.02.21
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Who Was That Masked Man? These Superheroes Fight ALS
Health Insight
07.02.21
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“What Can I Do?”
Sara's Life with ALS
07.02.21
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Egan: While she died of ALS, Carol Skinner’s spirit would not be conquered
Ottawa Citizen
07.02.21
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BC MLAs Susie Chant (NDP) and Karin Kilpatrick (Lib) work together to support ALS Action Canada
03.02.21
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COVID-19 vaccines show what’s possible. Now, former Obama staffer says it’s time to take that drive toward terminal illnesses like ALS.
30.01.21
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Hope through ALS clinical trials needed in the province, says B.C. man
Burns Lake Lakes District News
27.01.21
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NDP MP Heather McPherson joins federal ALS Caucus
22.01.21
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Opinion: Use COVID pause to reconsider drug-price regulation
Financial Post
18.01.21
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Breakthrough discovery reveals way of reversing Motor Neurone Disease damage
Herald
17.01.21
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Calls for ALS clinical trials in B.C.
CityNews 1130
08.01.21
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BC Man calling for Canada to approve ALS therapy treatments
CTV News
05.01.21
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ALS patients and advocates say Canada needs better access to new treatments
CBC News
03.01.21
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Canadians with ALS fear lengthy wait for new, potentially life saving drugs
CTV News Montreal
24.12.20
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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
23.12.20
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Fundraising underway for former Smithers resident diagnosed with ALS
Burns Lake Lakes District News
18.12.20
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ALS Action Canada meets with federal Liberal Party’s Pacific Caucus
18.12.20
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SNOWY STRONG Funds Distributed $200,000 Donated to Sunnybrook Health Sciences Centre
News Release
18.12.20
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Canadians with ALS Need Urgent Access to Promising Treatments Available Worldwide
Media Release
17.12.20
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Investigational drug SLS-005 (Trehalose) enters HEALEY ALS Platform Trial
Press Release
16.12.20
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Pandemic has made years of inadequate care worse, says extended care resident’s sister
CBC News
12.12.20
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Roadmap to a cure for ALS
110º Magazine
01.12.20
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Flames assistant GM Snow in ‘great spirits’ after surgery
TSN
30.11.20
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ALS Action Canada presents it ALS plan to MPs Tamara Jansen, Kenny Chiu, Kerry-Lynne Findlay and Tako Van Popta
30.11.20
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Co-founder of viral ALS Ice Bucket Challenge dies at 37
CTV News
23.11.20
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Donations pour in after local man diagnosed with ALS
BlackburnNews.com
23.11.20
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U of T Researchers Identify an Eye Signature for ALS
Temerty Faculty of Medicine, University of Toronto
23.11.20
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The Expanding Landscape of Therapeutic Targets In ALS Clinical Trials
Nicolas J. Maragakis, Johns Hopkins Medicine
19.11.20
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A Chippewa Secondary School graduate is helping lead national research on ALS
BayToday.ca
18.11.20
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Petition launched calling on Canada’s Health Minister to initiate pilot program to speed up approval process for new ALS therapies
08.11.20
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Jambaree Donates ALS / SLA Action Canada Website
Press Release
04.11.20
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It’s Official! All 30 Major League Baseball Teams Endorse League-Wide Lou Gehrig Day!
Press Release
30.10.20
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US House and Senate introduce Accelerating Access to Critical Therapies for ALS Act (ACT for ALS)
Press Release
29.10.20
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BRAUN: Bureaucrats will stop game-changing meds from coming here
Toronto Sun
28.10.20
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Patients, health organizations band together to bring breakthrough treatments to Canada sooner
Global News
21.10.20
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Toronto Blue Jays support annual, league-wide “Lou Gehrig Day” to help defeat ALS
21.10.20
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Deane Gorsline was diagnosed with ALS at 29 and is now fighting to access new treatments – watch a video about him here
17.10.20
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ALS Action Canada meets with BC NDP candidates from Vancouver’s North Shore
16.10.20
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BC goes to the polls on October 24; ALS Action Canada still waiting for response to letter
15.10.20
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ALS Action Canada meets with CF Get Loud Canada to discuss advancing Canada’s “Rare Disease Strategy”
15.10.20
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ALS Action Canada members takes part in pharmaceutical industry round-table
12.10.20
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ALS Action Canada meets with BC Liberal Party candidates from Vancouver’s North Shore
05.10.20
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A Windsor mom fights back against ALS diagnosis
Our Windsor
24.09.20
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ALS Action Canada calls for national leadership from BC for ALS treatment options, care and research
15.09.20
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ALS Action Canada meets with federal ALS Caucus members
08.09.20
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Pandemic rules keeping terminally ill man from seeing family
CBC News
07.09.20
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2 College Students Dreamed Up an A.L.S. Treatment. The Results Are In.
New York Times
02.09.20
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B.C. announces new coverage for ALS drugs, and funding towards centre of excellence
Maple Ridge Pitt Meadows News
25.08.20
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A new approach to ALS drug trials gives patients hope
Boston Globe
12.08.20
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ALS Action Canada’s submission on the “Proposed Alignment of CADTH Drug Reimbursement Review Process”
10.08.20
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ALS Action Canada calls on Major League Baseball and Toronto Blue Jays to support annual Lou Gehrig Day
08.08.20
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ALS Action Canada’s submission to the Federal Government for the 2021 Budget
06.08.20
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ALS Action Canada’s submission to the federal Patent Medicine Prices Review Board
04.08.20
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Tofersen Safe, Appears to Slow Disease Progression in SOD1 ALS Patients, Phase 1/2 Trial Shows
ALS News Today
22.07.20
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Larry Uteck entering Canadian Football Hall of Fame
CBC
16.07.20
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Life in long-term hospital “unbearable”: Montreal man with ALS
Montreal Gazette
15.07.20
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ALS Action Canada meets with Francis Drouin, Chair of federal ALS Caucus
03.07.20
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Trick-shot challenge shines spotlight on Flames exec Chris Snow in fight with ALS
Calgary Sun
19.06.20
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North Van family living with ALS advocates for more research
North Shore News
18.06.20
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BC Government provides “non response” response to concerns of 15 BC ALS families
12.06.20
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ALS Action Canada meets with MP Kerry-Lynne Findlay, PC, Q,C, (South Surrey – White Rock)
10.06.20
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Staying positive after a shattering ALS diagnosis
Belleville Intelligencer
05.06.20
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Hope for an ALS cure for Squamish ski instructor, and others like him
Squamish Chief
04.06.20
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Star Trek’s Kenneth Mitchell Opens Up About Continuing His Acting Career After ALS Diagnosis
People.com
19.03.20
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This Ontario teen was 12 when she became a caregiver. She’s not alone .
CBC News
29.01.20
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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)
27.01.20
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Former Peterborough Pete Mark Kirton now facing off against ALS
Peterborough Examiner
27.10.19
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How one man is speaking up for ALS patients, even without his voice
CBC Radio
25.10.19
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“Dance Me To The End: Ten Months and Ten Days with ALS” by BC author, Alison Acheson
23.10.19
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Paralyzed author writes about loss and grief in book written with his eyes
CTV News
22.09.19
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PJ Stock Competes in The Battle of the Blades in support of ALS
Press Release
19.09.19
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Sean M. Healey & AMG Center for ALS at Mass General launches first ALS Platform Trial with 5 promising drugs
Press Release
18.09.19
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We need a public outcry’: B.C. father with ALS ends life after struggle to stay at home
CTV News
09.08.19
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Former NHL’er, Aaron Volpatti finishes Ironman for ALS
Revelstoke Review
08.08.19
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Former Kelowna hockey player dies after battle with ALS
Kelowna Capital News
21.05.19
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Ottawa approves drug shown to slow down deadly neurological disease ALS
CBC News
04.10.18
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Montreal neurologist says doctors must be better about early detection of ALS
Montreal Gazette
12.06.18
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ALS has devastating effect on families
The Chronicle Herald
07.06.18
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ALS: Canadian patients eligible for inclusion in U.S. clinical trials
Montreal Gazette
29.03.18
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Life takes an unpredictable turn for well-known South Okanagan baker
Penticton Western News
21.03.18
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The Joe Thornton And Steve Barber Story | Hometown Hockey
SPORTSNET | Hometown Hockey
19.11.17
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The New Pornographers’ Kathryn Calder Recalls Her Mother’s Terminal Illness in a Documentary
Medium
21.04.17
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BrainStorm Seeking Approval To Distribute NurOwn® in Canada
Media Release
21.02.17
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BrainStorm seeks early approval for ALS stem cell treatment in Canada
CTV Moring News
21.02.17
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Dean Stock, former Halifax Mooseheads’ captain, dies after battle with ALS
25.09.16
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Mauril Bélanger, longtime Ottawa-Vanier MP, dies of ALS at 61
CBC News
16.08.16
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“Hold On, Let Go: Facing ALS with courage and hope”, by Nadine Sands
04.05.15
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Understanding ALS
Maclean's
11.03.14
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