ALS Action Canada @ALSAction
We're Canada's first and only ALS patient-led nonprofit organization fighting to #EndALS forever. Join us! Charitable organization BN: 791367204 RR 0001 alsactioncanada.org/donate/ Canada #EndALS Joined April 2020-
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#HealeyALSPlatformTrial 2morow 4/11 @ 5pmEST: Join us 4 updates by @MeritCudkowicz, who'll be joined by #PlatformTrial Reg E Co-Lead Shafeeq Ladha, MD & several biostat's, to provide community update on Reg E's investigation of Trehalose by @seelostx. Reg: bit.ly/3KKsme2
Tune in to hear Darryl, one of our members, bravely share his journey of living with ALS. Join us in our mission to #EndALS.
Top line results of the TUDCA-ALS trial are announced at tudca.eu/top-line-resul…. The study did not meet the primary endpoint and there were also no significant differences observed across secondary endpoints at 18 months. Full results will likely be presented at ENCALS 2024.
We said it before...and we will say it again: Incredible shoutout to the @Canucks for their 50/50 last Saturday in support of the ALS Super Fund and Project Hope. Big thanks to @KirtSpeaksALS for leading the charge! 🙌 #ENDALS
Join Steve Dangle as he watches the Toronto Maple Leafs Vs the Edmonton Oilers LIVE. Go to alsactioncanada.org/merch/ to buy the shirt! Please post pictures of yourself wearing the apparel on social media, using #endALS to spread more awareness! youtube.com/watch?v=aLB7Rm…
Join forces with us and all Canadian NHL teams in supporting the ALS Super Fund! Led by ex-NHL player Mark Kirton, tonight's 50/50 draw is making a difference for those battling ALS. 💙 BUY NOW | canucks.com/5050 FIND OUT MORE | alssuperfund.ca
Thank you Vancouver Canucks who will be supporting our ALS Super Fund during Saturday nights Game 50-50 raffle. Impressive how the 7 NHL Canadian teams have banded together to support finding a cure for ALS @DougMaclean @Ron_MacLean @NHLAlumni #endals @Canucks #nhl @JShannonhl
Thank you Vancouver Canucks who will be supporting our ALS Super Fund during Saturday nights Game 50-50 raffle. Impressive how the 7 NHL Canadian teams have banded together to support finding a cure for ALS @DougMaclean @Ron_MacLean @NHLAlumni #endals @Canucks #nhl @JShannonhl
The Canucks are raising money at tomorrow nights game to support the ALS Action Canada Superfund! This is part of an initiative by all 7 Canadian teams to support the fight against ALS! The proceeds of the 50/50 draw will go to support the ALS community in BC. @ALSAction @ALS_BC
Grateful to have had the chance to discuss how new technologies, a better understanding of the underlying drivers of motor neuron cell death and the development of a #biomarker driven approach is leading to real progress in treatments of #ALS at #adpd2024 .
Thank you Canucks! We'll be ready for tomorrow.
Thank you Canucks! We'll be ready for tomorrow.
This decision by @NICEComms is utterly wrong and is likely to deny a life-saving treatment for people with SOD1 #ALS #MND that is already approved in Europe and the US. A terrible, wrong-headed decision that must be changed. @DHSCgovuk @mndassoc @MNDoddie5 @MNDScotland
This decision by @NICEComms is utterly wrong and is likely to deny a life-saving treatment for people with SOD1 #ALS #MND that is already approved in Europe and the US. A terrible, wrong-headed decision that must be changed. @DHSCgovuk @mndassoc @MNDoddie5 @MNDScotland
Santé Canada accepte d’examiner une présentation de drogue nouvelle pour le tofersen destiné au traitement d’une forme génétique rare de la SLA. biogen.ca/fr-ca/nouvelle…
Health Canada Accepts for Review New Drug Submission for Tofersen for Treatment of Rare, Genetic Form of ALS. @BorsatoDarryl @biogen biogen.ca/en-ca/news/202…
Difficult news for the ALS/MND community this morning regarding the PHOENIX trial. Nonetheless, big thank you to the @AmylyxPharma team for taking a leap and for their hard work to develop Albrioza.
Difficult news for the ALS/MND community this morning regarding the PHOENIX trial. Nonetheless, big thank you to the @AmylyxPharma team for taking a leap and for their hard work to develop Albrioza.
The ALS Therapy Development Institute (@ALSTDI), @AnswerALS, and @Microsoft are pleased to announce a collaboration that will bring together the two largest existing clinical and omics data sets relating to ALS.
Ut-oh... AB Science announces that Health Canada has issued a Notice of Non-Compliance-Withdrawal (NON/w) for masitinib in ALS globenewswire.com/news-release/2…
The ALSFRS-R is a widely used measure of function in #ALS #MND. It has problems. For example, loss of a point on the scale does not correspond consistently with the same degree of loss of function. We have addressed that with Rasch analysis here: tandfonline.com/doi/full/10.10…
👏 Huge thank you to @RABlaney you and Jida Hajjar @ALSAction and Ms. Hajjar for making our #RareDiseaseDay event on Parliament Hill a huge success!
Toferesen/Qalsody reommended for approval by European Medicines Agency: ema.europa.eu/en/news/new-tr…
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
AZ Latina ☮️🌊�.. @aVoice4ALS
4K Followers 5K Following Political Junkie. Advocate for Enviro Justice, Foster Care, Gun Safety, DEI, Amyloidosis, PD, ALS & Rare Diseases. Love LA Sports. I block disrespectful people.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Sandra W. Marlowe @sandrawmarlowe
3K Followers 1K Following Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
Mark Kirton @KirtSpeaksALS
2K Followers 1K Following Former NHLer (Tor, Det. & Van.), Married & father of 3. Diagnosed with ALS in 2018… Symptom onset 2015. Member of ALSAC and pushing for a cure.
I AM ALS @iamalsorg
26K Followers 799 Following I AM ALS is a patient-led movement revolutionizing how to end disease with our sights set squarely on ALS.
Nate Methot @a_life_derailed
2K Followers 777 Following Author of "A Life Derailed: My Journey with ALS", a memoir 39 y/o living with #ALS since 2011. #EndALS #empathy #awareness Memoir and blog at https://t.co/lSqWxLqUXm
Andrea Pauls Backman .. @AndreaBackman05
2K Followers 1K Following ALS strategist, former CEO @lesturnerals, board member various ALS orgs. lost mom to ALS in 2010. passionate about people w ALS/MND & fighting for cures.
ALS ACCESS @brainmatters10
2K Followers 2K Following Fighting for a cure for ALS/MND/ and it’s variants. Fighting daily for many years, for ALS drug access. Sod1 Gene carrier.
Steven Gallagher @SteveGMedia
4K Followers 1K Following Olivia’s dad. Family first. Niagara booster, healthcare communicator. Loyal Bills, Blue Jays and Sabres fan. als WARRIOR
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 909 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
Dr. Nadia Sethi @nadia_sethi
2K Followers 2K Following Director, Community Outreach and Engagement at ALS TDI. ALS we are coming for you. Widowed by ALS and still fighting it. Views expressed here are my own.
Grant W Smith @GWSmith14
1K Followers 1K Following MUFC ! Proud Husband, Dad and GrandDad. Diagnosed with ALS in October 2020, I battle the BEAST everyday. #ENDALS #ALSLife
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
No More Excuses ALS W.. @als_now
4K Followers 1K Following ALS advocate fighting for transparency, access to effective therapies, and ensuring ALS patients aren't victims of weak drug pharma gouging. YT: ALSNewsNow
Hani Nadhir @NadhirHani5226
9 Followers 164 Following
Carin @carin_franks67
199 Followers 3K Following
Valerie Dehombreux @VDehombreux
4 Followers 87 Following
Betty’s Brigade Fou.. @No_More_ALS
346 Followers 530 Following We Are… the Betty’s Brigade Foundation ________ We Are… Fighting ALS Together _________________ - to raise ALS awareness & funding
Charitable Impact @wearecharitable
4K Followers 4K Following 🗳️ Think outside the donation box 💫 Create change 🇨🇦 Support any Canadian registered charity 🧑💻 How and when you choose 🚫 No pressure, no strings attach
Proud Retired Navy CA.. @KRob8753
2K Followers 3K Following ALS is my battle now. 1/6/21 was an attempted coup. Never Trump. “We convey by our presence, and our actions, that which is important.”
Seyhun Saçlı @SaclSeyhun
65 Followers 163 Following
Pe_qui7 @Qui7Pe63205
57 Followers 2K Following
Mia_Thompso @ThompsoMia99438
30 Followers 2K Following
Sinkers19 (Lyn) @ellcow19
505 Followers 2K Following i'm Australian with a strong interest in US democracy since my son was sucked into Qanon and destroyed his life. Trump hater.
Louis Del Re @14BigLou92
43 Followers 113 Following
Deshi @Deshi137689590
33 Followers 2K Following
Setheau @setheau9034
22 Followers 2K Following
FashionFury @FashionFur81960
48 Followers 2K Following
75ry9wixsqabkqj @arqaz6gu6fmax
1 Followers 212 Following If you want to make friends, you can contact me anytime TG：https://t.co/STTFiXrIF5
Dash_Dart @dash_dart54141
77 Followers 2K Following
Brian Donovan @CheckBd
8 Followers 69 Following Diagnosed with ALS in 2024, but embracing hope. A proud husband, dad, and granddad, believe in future breakthroughs and cherish every family moment.
us_Eleanor_ @UEleanor42300
25 Followers 2K Following
Thita @Thita1687820
45 Followers 2K Following
Vivre dans la Dignit�.. @Vivredignite
829 Followers 2K Following Réseau de citoyens et d'experts dédié à la promotion de la dignité inhérente et inaliénable de chaque personne, peu importe son état de santé. FR / EN.
Ottawa Joe @SensFan1993
12 Followers 250 Following
Marc Shenouda @marc__shenouda
89 Followers 180 Following 👨🏻🔬 🔬 Post-Doc working to alleviate TDP-43 pathology in ALS 🧫🧠
Peace and Love Sports @petetheleafsfan
245 Followers 461 Following FOLLOW FOR MORE PEACE AND LOVE SPORTS! ✌🏼❤️
janice wanus @janicewanus
33 Followers 676 Following
B Work @Bsayers11
17 Followers 18 Following
Lisa Moore @LisaMoore15683
94 Followers 3K Following
Nitesh Sanghai, PhD C.. @Sanghai_MedChem
163 Followers 573 Following Medicinal Chemistry, Drug Discovery. Doing Science to bring meaningful impact in human life. Let’s come together to bring “Hope” in People’s Lives. Love you God
Melissa judd @Melissa39106489
19 Followers 254 Following
Pat mcmann @Patmcmann1
181 Followers 4K Following volunteering with Calgary Stampede Caravan Commttee, Sherwood Park Crusaders Canadian Blood Services Northern Alberta and Avon Canada Representative
C. Zhang @Hansen_010101
15 Followers 81 Following
Canadian Rare Disease.. @CanadianRDN
223 Followers 586 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Smile69Canada @Smile69Canada
35 Followers 687 Following Tansi, I am Angela 🙂♋️🇨🇦 #peacelovejoygratitude 🐳 #0G🇨🇦 #5GAlberta #3Gyeg #0G😇🐉☯️✨️🌚🌌🌝 buck🦌gladstone 🙂🪨 belcourt&buck🌳gladstone&murray
Oilers Foundation @Oil_Foundation
18K Followers 533 Following Official Twitter account of the @EdmontonOilers Community Foundation (EOCF). Changing lives in #OilCountry since 2001.
Jackson @lifewithALS
1K Followers 699 Following Mum of 2 wonderful boys. 3 cats. Diagnosed August 2022 with ALS determined to fight and stay strong until a cure is found. Forever hopeful 🧡💙🧡💙
Elin Adcock @elin_adcock
86 Followers 263 Following An ALS/FTD advocate and a vintage VW enthusiast, I am here to amplify voices, support caregivers, change healthcare policies and hoping to #endALS #fight2endALS
Tayshe @Tayshe243139
205 Followers 6K Following
Buck-a-Puck for ALS @buckapuckforals
55 Followers 113 Following Buck-a-Puck for ALS is a fundraiser created by a team of hockey kids on a mission to raise a MILLION dollars for ALS research to honour their coach.
Kevin Geraghty @KevinMGeraghty
234 Followers 351 Following 40 year old hell bent on living and fighting #ALS with every fiber of my being. If you’re going through hell, keep going. #IAMALS #EndALS #fuckALS
Stop ALS Now @StopAlsNow
3 Followers 18 Following
🏔️ Paul @ Munros.. @Munros4MND
2K Followers 3K Following 🌟 Doddie Champion 🌟 Attempting to climb Scotland's 282 highest mountains (Munros) & raising money for @MNDoddie5 🏔 £75,000 & counting... #DoingItForDad 💔
Malisa Kofron @mali_kofr
41 Followers 5K Following
PJ Stock @PJStock28
77K Followers 1K Following Bruins, Habs, Flyers, Rangers - 4th liner offensive juggernaut. Franglais on RDS. Weekly @PJStockTalk @PJStock42 on Instagram.
Karl Kolada @KKolada
148 Followers 1K Following Husband/Father, Down syndrome advocate. Proud 🇺🇦🇨🇦from MB now in NB. Burton Cummings will sing my eulogy at the 100th meridian where the Great Plains begin
Kimbery Wehunt @WehKimb
68 Followers 5K Following
Alessandra Mccalop @mccal_alessand
38 Followers 5K Following
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Chris Snow @ChrisSnowCGY
26K Followers 194 Following Husband & Dad | Walking science experiment | Determined to beat ALS & win a Stanley Cup | Citizen of both 🇺🇸🇨🇦 | Assistant General Manager, Calgary Flames
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Mark Kirton @KirtSpeaksALS
2K Followers 1K Following Former NHLer (Tor, Det. & Van.), Married & father of 3. Diagnosed with ALS in 2018… Symptom onset 2015. Member of ALSAC and pushing for a cure.
I AM ALS @iamalsorg
26K Followers 799 Following I AM ALS is a patient-led movement revolutionizing how to end disease with our sights set squarely on ALS.
Andrea Pauls Backman .. @AndreaBackman05
2K Followers 1K Following ALS strategist, former CEO @lesturnerals, board member various ALS orgs. lost mom to ALS in 2010. passionate about people w ALS/MND & fighting for cures.
ALS ACCESS @brainmatters10
2K Followers 2K Following Fighting for a cure for ALS/MND/ and it’s variants. Fighting daily for many years, for ALS drug access. Sod1 Gene carrier.
ALS Uncensored 🏴�.. @ScottsFight
2K Followers 1K Following Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI
Steve Gleason - "Live.. @SteveGleason
199K Followers 247 Following New Instagram - @stevegleasonofficial Dad. Husband. Inspiring all people to live purposefully, despite tragedy. I tweet with my eyes. Embracing ALS.
Dr. Nadia Sethi @nadia_sethi
2K Followers 2K Following Director, Community Outreach and Engagement at ALS TDI. ALS we are coming for you. Widowed by ALS and still fighting it. Views expressed here are my own.
Grant W Smith @GWSmith14
1K Followers 1K Following MUFC ! Proud Husband, Dad and GrandDad. Diagnosed with ALS in October 2020, I battle the BEAST everyday. #ENDALS #ALSLife
Jean C9orf72 @Jeanc9orf72
1K Followers 855 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
No More Excuses ALS W.. @als_now
4K Followers 1K Following ALS advocate fighting for transparency, access to effective therapies, and ensuring ALS patients aren't victims of weak drug pharma gouging. YT: ALSNewsNow
BrainStorm @BrainstormCell
5K Followers 777 Following BrainStorm Cell Therapeutics, Inc. (NASDAQ: BCLI) is a clinical-stage biotechnology company developing autologous cell therapies for neurodegenerative diseases.
ALS Canada @ALSCanada
7K Followers 2K Following We work with the ALS community to improve the lives of people affected by ALS through support, advocacy and investment in research for a future without ALS.
Vancouver Canucks @Canucks
1.1M Followers 242 Following #AllTogether. All In. The official Twitter account of the Vancouver Canucks!
iPolitics @iPoliticsCA
82K Followers 2K Following Canadian political news, opinions, and analysis. #cdnpoli
Steve “Dangle” Gl.. @Steve_Dangle
229K Followers 3K Following Hockey YouTuber. SDPN CEO. Steve Dangle Podcast. I wrote a book. Laugh a little. He/Him.
Research Canada @ResearchCda
8K Followers 1K Following A national alliance dedicated to advancing health research & innovation. Working for all Canadians, we engage all sectors to build support for our ecosystem.
Global Public Affairs @GPAinsights
4K Followers 2K Following Canada's leading government relations and strategic communications firm. #GPAinsights🌐
CAHR: Canadian Assoc... @CAHR_ACRSS
530 Followers 220 Following
RARE innovators @RAREinnovators
170 Followers 186 Following Committed to improving the lives of patients around the world living with rare disorders by researching, developing and commercializing rare disease treatments.
Santis Health @SantisHealth
1K Followers 681 Following Santis Health is Canada's leading health care consultancy. We analyze the situation, consider the environment, and develop a tailored plan to help.
Mark Holland @markhollandlib
14K Followers 2K Following MP for Ajax, Canada's Minister of Health | Député pour Ajax, Ministre de la santé du Canada
Bloom Burton & Co. @bloomburton
971 Followers 0 Following Bloom Burton & Co. is a healthcare investment firm dedicated to accelerating returns in the healthcare sector for both investors and companies.
CIHI_ICIS @CIHI_ICIS
34K Followers 3K Following Canada’s leading source of high-quality health data. Principale source de données de grande qualité sur la santé au pays.
Canadian Medical Asso.. @CMA_Docs
68K Followers 2K Following The CMA leads a national movement with physicians who believe in a better future of health. Français: @AMC_Sante
Ontario Health @OntarioHealthOH
31K Followers 696 Following Ontario Health connects and coordinates within our province’s health care system. | En français: @SanteOntarioSO
Healthcare Excellence.. @HE_ES_Canada
14K Followers 1K Following Shaping the future of quality and safety. Together. Façonner l’avenir de la qualité et de la sécurité. Ensemble.
adMare BioInnovations @adMare_Bio
5K Followers 2K Following adMare’s Vision is Canadian life sciences leading the world. We are on a mission to realize this vision by building companies, ecosystems and talent.
Life Sciences Ontario @LifeSciencesON
5K Followers 1K Following Life Sciences Ontario (LSO) is a not-for-profit, member-driven organization advancing the success of Ontario's life sciences sector.
The Crick @TheCrick
57K Followers 2K Following We are a biomedical discovery institute breaking down barriers between disciplines. A space where some of the world's most talented scientists pursue big ideas.
Luc Thériault @luctheriaultbq
2K Followers 1K Following Député de Montcalm; porte-parole en Santé, aide médicale à mourir et Institutions démocratiques pour le Bloc Québécois.
Rachel Blaney (She/He.. @RABlaney
4K Followers 1K Following MP for North Island - Powell River. NDP Whip, Spokesperson for Seniors, Veterans, and Rural Economic Development. (She/Her)
Rare Diseases Clinica.. @rarediseasesnet
8K Followers 507 Following NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
Eli Lilly and Company @EliLillyandCo
143K Followers 1K Following Uniting caring with discovery to create medicines that make life better worldwide. Lilly’s official account (formerly LillyPad) https://t.co/oXewUD8FZI
FiercePharma @FiercePharma
98K Followers 485 Following Pharma’s go-to destination for news & trends shaping approved drugs. Delivering news, revealing insights straight to your inbox.
AbbVie @abbvie
80K Followers 481 Following Official global handle sharing the latest news about our company, science & people. Review our guidelines: https://t.co/AY8CXTtpuM
Marc Shenouda @marc__shenouda
89 Followers 180 Following 👨🏻🔬 🔬 Post-Doc working to alleviate TDP-43 pathology in ALS 🧫🧠
Peace and Love Sports @petetheleafsfan
245 Followers 461 Following FOLLOW FOR MORE PEACE AND LOVE SPORTS! ✌🏼❤️
Team Drea Foundation @TeamDreaFdn
508 Followers 219 Following Nonprofit & team of 200 athletes who have raised $750k to defeat ALS. Andrea is aiming to be the 1st person w/ ALS to do a marathon in all 50 states on a trike.
Oilers Foundation @Oil_Foundation
18K Followers 533 Following Official Twitter account of the @EdmontonOilers Community Foundation (EOCF). Changing lives in #OilCountry since 2001.
ALS ONE @alsone_official
949 Followers 634 Following Our world leaders in ALS research & care have united 2 advance critical research towards a cure while improving the qual of life of individuals living w/ALS now
Muscular Dystrophy As.. @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
ern euro_nmd @euro_nmd
2K Followers 738 Following Building bridges and breaking barriers in rare neuromuscular diseases.
Muscular Dystrophy Ca.. @MD_Canada
5K Followers 1K Following MDC's mission is to help people with neuromuscular disorders live life on their own terms. #WalkRollMDC #MuscularDystrophy FR: @Action_Musclee
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
Journal of Neuromuscu.. @journal_nd
2K Followers 600 Following JND | Dedicated to expediting our understanding & improving treatments of neuromuscular diseases | Editors: Carsten G. Bönnemann & Hanns Lochmüller
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Les Turner ALS Founda.. @LesTurnerALS
4K Followers 575 Following The leader in comprehensive #ALS care in Chicagoland
Durhane Wong-Rieger @Durhane
2K Followers 240 Following Durhane Wong-Rieger is president of the Canadian Organization for Rare Disorders. She is also president and CEO of the Institute for Optimizing Health Outcomes.
Her ALS Story @HerALSStory
2K Followers 165 Following We are a group of women diagnosed with ALS before our 35th birthday who are challenging the stereotype that this is an old white man's disease.
3SixtyPublicAffairs @3SixtyPA
262 Followers 141 Following
Best Medicines Coalit.. @BMC_Patients
969 Followers 768 Following The Best Medicines Coalition is a national alliance of 31 Canadian patient organizations.
Chris MacLeod @macleodscanada
6K Followers 6K Following Lawyer, entrepreneur, advocate. Founding partner at @CambridgeLLP. Founder of @cfadvocacynow. Author of Beating The Odds @chrismacleodBTO
Sue McMaster @QuestCommInc
635 Followers 1K Following Finding the beauty in every day. Living w/bulbar ALS since Sept 20. Proud Mom and kitty mama. #endALS
Constance Marie @conniembecker
339 Followers 1K Following ALS Advocate - SOD1 #PayneintheALS - Chicago Cubs fan
Dave Stanley @TheSteemer
936 Followers 992 Following Rest in Peace my Queen. Lost my wife of 27 years to ALS on Jan 6, 2020. Advocate for ALL people battling this shitty disease. My heroes are Warriors and cALS.
Alexandra Yacyshyn @afyacyshyn
169 Followers 275 Following 🇨🇦 NSERC Postdoc @ U Alberta, motor units in ALS 📚 PhD+MSc Kinesiology, muscle fatigue 📚 BSc Biol @ UBCO, Christian
@DrOzdinler Here’s the link to the new HC entity for accelerating clinical trials. There are research networks that can include international members and $950K CDN was just dispersed on grants on various needs. Contact @ALSAction Executive Director Jida Hajjar. Link: act-aec.ca/call-for-propo…
💙 @oliviergoy @jmwasielewska @VPResearch_ALS @ALSAction @_philmcgoldrick @WalkerNeuroLab @Brain1878 @AndreaBackman05 @BritishNeuro @BetterResearch @FrontNeurosci @respphysio @kelsieswrites @SfNtweets @NeuroscienceNew @ALSCanada @NeurologyToday @BrainAppeal @AmmarAlChalabi
La Fondation Brain Canada est reconnaissante à Allan Kliger, Aviva Rajsky et leur famille d'avoir fait un don inspirant pour la première édition de la Bourse Étoile montante Olivier Goy en recherche sur la SLA.braincanada.ca/fr/bourse-etoi…
Join forces with us and all Canadian NHL teams in supporting the ALS Super Fund! Led by ex-NHL player Mark Kirton, tonight's 50/50 draw is making a difference for those battling ALS. 💙 BUY NOW | canucks.com/5050 FIND OUT MORE | alssuperfund.ca
Thank you Vancouver Canucks who will be supporting our ALS Super Fund during Saturday nights Game 50-50 raffle. Impressive how the 7 NHL Canadian teams have banded together to support finding a cure for ALS @DougMaclean @Ron_MacLean @NHLAlumni #endals @Canucks #nhl @JShannonhl
The #Canucks and the @Canucksforkids Fund announced today that proceeds from the 50/50 jackpot on Saturday, March 23rd will support the ALS Super Fund to continue the fight to end ALS. DETAILS | vancanucks.co/3VujKiw
The Canucks are raising money at tomorrow nights game to support the ALS Action Canada Superfund! This is part of an initiative by all 7 Canadian teams to support the fight against ALS! The proceeds of the 50/50 draw will go to support the ALS community in BC. @ALSAction @ALS_BC
🔥 TOMORROW NIGHT! 🔥 @Steve_Dangle is streaming live during Leafs vs. Oilers over on the sdpn YouTube channel! Join us at 7PM! ➡️ ow.ly/bmqo50R06ZG
Grateful to have had the chance to discuss how new technologies, a better understanding of the underlying drivers of motor neuron cell death and the development of a #biomarker driven approach is leading to real progress in treatments of #ALS at #adpd2024 .
To all in the ALS world (and everyone with serious diseases), it's ok to not feel the joy and excitement that is forced on us this time of year. I know many of you feel lonely even in a room full of people. We've lost so many to ALS this year and those families are hurting.
This time of year can be complicated for many. While it can be a time of great joy for so many, it can also be a time of great sadness for others. It can unlock both happy memories and sad ones. It can be a time of love and connection for some, and a time of loneliness and…
The #Canucks and the @Canucksforkids Fund announced today that proceeds from the 50/50 jackpot on Saturday, March 23rd will support the ALS Super Fund to continue the fight to end ALS. DETAILS | vancanucks.co/3VujKiw
Welcome back from lunch, and let's get to our next panel with @FionaHTA, Victoria Hodgkinson, University of Calgary, Allison Wills, 20Sense, and Beth Kidd, Health Coalition of Alberta
Thank you @TELUS for lighting up Telus Garden and honouring my late husband, Greg Gowe. It was a special night for our family. #EndALS @ALSAction
When it comes to rare disease policy, patients are right to be impatient” Read @Durhane new op-ed in @natnewswatch: nationalnewswatch.com/2024/02/29/whe… #Canada4Rare #FightForOurLives
All #rarediseases should be treatable. Working towards effective therapies is essential. Each year, NeuroCRU adds new conditions to its list of trials, like #MOGAD, #FSHD, #Huntingtons and #CJD. Patients deserve the option of accessing investigational treatments. #RareDiseaseDay
The ALSFRS-R is a widely used measure of function in #ALS #MND. It has problems. For example, loss of a point on the scale does not correspond consistently with the same degree of loss of function. We have addressed that with Rasch analysis here: tandfonline.com/doi/full/10.10…
Aiming to better understand #ALS, CAPTURE ALS is a platform established to gather biological samples, data, and experiences of people w/ ALS and healthy volunteers across Canada. Learn more about CAPTURE ALS and the importance of community participation: bit.ly/49n8h8T.
Breaking X pause for a very special #RareDiseaseDay. Can’t wait to begin collaborating with patient partners & caregivers & the entire RD community with RareKids-CAN! @micyrn @INFORMRARE @IMPACT_PSANZ @CIHR_IRSC @CIHR_IG
Wow, what an incredible #RareDiseaseDay2024 ! 🎉We officially unveiled our mission to unite for rare diseases. Join CRDN in advancing rare disease care, research, and innovation! canadianrdn.ca/become-a-membe… @raredisorders #CRDN #RareLivesSharedStrength #Canada4Rare
Our research-to-care model integrates research, translation, and patient-centered care to break new ground to address challenges faced by rare disease patients in Canada. 🤝For more information, view the official launch story at lnkd.in/gW-DrcfC #CRDNLaunch
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