David Taylor @VPResearch_ALS
ALS Canada VP, Research. Passionate ALS research nerd since 2001. Science brain, advocate heart. Opinions are my own. he/him Joined March 2021-
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Join ALS Canada, on May 2 at 1:00 pm ET, for ALS Clinical Trials Unboxed. This month, Erin Fleming, Vice-President, Research and Development at ProJenX will present on a Phase 1 clinical study to evaluate prosetin for ALS. To register for webinar, visit bit.ly/448mOTY.
Don’t forget…ALS Office Hours tomorrow at 1 ET! I’ll be moderating tomorrow’s discussion, so make sure to join us! Everyone is welcome! Bring your questions or just sit and enjoy the conversation! For more information and the zoom link, please visit Officehoursals.com
Have you wondered about what to think about before you participate in research? Join the CAPTURE ALS participant engagement webinar and ask Dr. Wendy Johnston your questions about CAPTURE ALS and clinical research participation in general. For more information and to register,…
This is also an open Q&A for anyone with questions about anything on ALS. It's a welcoming environment to all people & all questions. The presentation part is short & the same basic intro to research each month.
This is also an open Q&A for anyone with questions about anything on ALS. It's a welcoming environment to all people & all questions. The presentation part is short & the same basic intro to research each month.
Want to learn more about ALS research and clinical trials? On Wed., April 17, at 1:00 pm ET, join ALS Canada for ALS Research and Clinical Trials 101, an opportunity to ask our Team your questions. To register for the webinar & submit your questions, visit bit.ly/3wKEIja
1/ We are very excited to share our lab’s first venture into the field of #ALS and #FTD with our manuscript: “A stress-responsive TDP-43 SUMOylation program preserves neuronal function” out now on @biorxivpreprint! biorxiv.org/content/10.110…
And there are women and men who are caregivers who also could use a little flexibility in ALS trials. With ALS it takes a person with ALS to be the trial participant AND a caregiver to make that possible. 1/
And there are women and men who are caregivers who also could use a little flexibility in ALS trials. With ALS it takes a person with ALS to be the trial participant AND a caregiver to make that possible. 1/
Amylyx announced that they have started a process with Health Canada to discontinue the marketing authorization for ALBRIOZA. This decision comes as a result of the recent PHOENIX trial results. While we know that this news is disappointing for the #ALS community, ongoing…
Amylyx $AMLX to pull ALS drug from market, cut 70% of staff statnews.com/2024/04/04/amy… via @ADeAngelis_bio News aside, I have deep respect for the way Josh and Justin have handled the Relyvrio situation. A lot of companies talk about prioritizing patients over business. Amylyx…
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
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.
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.
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.
MND Research @mndresearch
13K Followers 511 Following Research Development team at the Motor Neurone Disease Association of England, Wales & NI. We fund and promote cutting-edge #MND research & organise #alsmndsymp
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
Ammar Al-Chalabi @AmmarAlChalabi
5K Followers 4K Following Professor of Neurology and Complex Disease Genetics, King's College London. Co-Director UK MND Research Institute https://t.co/CR2sIAKgHI #MND #ALS Specialist.
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.
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.
Hande Ozdinler @DrOzdinler
27K Followers 716 Following Neuroscientist, Scientist, Mother, Poet, Press member, Inventor of OzdinART Our research will help end ALS, HSP and PLS.
Mandi @RunningMama0522
2K Followers 1K Following
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
ALS TX DAD @AlsDads
2K Followers 894 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
Jean C9orf72 @Jeanc9orf72
1K Followers 855 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
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.
SOD1 EndALS @CEHaddadNP
2K Followers 2K Following #ALS #fALS #SOD1 In the fight to save my family from ALS. Twin mom. Nurse practitioner. grieving daughter - 8/30/22 lost mom #33 in our family
Hani Nadhir @NadhirHani5226
9 Followers 164 Following
V. Kontogianni @vickykonto
0 Followers 23 Following
linda Pearl @pearl_lind86328
4 Followers 74 Following
Brande Pfleger @BranPfleg
54 Followers 5K Following
Barney Bryson @DrBarneyB
87 Followers 95 Following
Neil Emms @neil_emms
2K Followers 303 Following Father, (now retired) electrician, sub-par rock climber, okay skiier, world renowned specialist in the art of frustrated plier-chucking, living with ALS.
Dan Krocker @dan_krocke37895
0 Followers 3 Following
Chris Chatham @chchatham
2K Followers 4K Following Sorting the universe of possible medicines for the mind: I use computational, cognitive and developmental neuroscience in the service of therapeutic discovery.
Freckle100 @Freckles1100
81 Followers 111 Following
Doria Heusinkveld @DoriaHeusi61059
65 Followers 5K Following
Louis Del Re @14BigLou92
43 Followers 113 Following
Rob Etherington @RobEtherington7
6 Followers 44 Following
Jose Laphit @jlapiz93
78 Followers 323 Following Milanesa 🇦🇷y PB&Jelly 🇺🇸. “ Jack of all trades. Master of None”
MSWeston pALS @COWolverines
6 Followers 37 Following
ProJenX @ProJenX
36 Followers 31 Following
Tee to Green @BlueFairways7
834 Followers 3K Following Golfer-Cannabis-MJ/MMJ advocate. Making better medicine.
Tooteesl @tooteesl52863
24 Followers 2K Following
Neuroscience & Psycho.. @neuro_and_psy
4 Followers 97 Following Neuroscience & psychology student with a special interest in migraines, chronic pain, ADHD, ME/CFS, LongCovid, sleep, meditation, keto, tweets German & English
Daily Runner @AtassiNazem
282 Followers 96 Following
Poornimaa @poornima1310
181 Followers 520 Following
Antione Cuff, CPA @Cuffycakes08
357 Followers 603 Following Truth, Love, Peace, Honor, and Patience are virtues I strive to achieve. Father, Husband. Salisbury Univ. Graduate and Alum. My opinions are my own.
Maceo Carter @MaceoCarter
931 Followers 553 Following Father, Husband, UNC Tarheels Fan, Sibling, Living with ALS. #MelanatedpALS&cALS
Emmeline Birnberg @EmmeliBirnbe
87 Followers 5K Following
CureCHM @curechm
3K Followers 4K Following The Choroideremia Research Foundation supports research, education, and advocacy regarding CHM, a hereditary retinal-degenerative disease that causes blindness.
OrrLaboratory @OrrLaboratory
267 Followers 345 Following Studying #Dementia #Astrocytes #Mitochondria Neurotherapeutics. Pursuing audacious team-based science, helping trainees achieve their highest potential #PhDlife
Ottilie Mulloy @OttilMul
34 Followers 5K Following
n-Lorem Foundation @n_lorem
1K Followers 572 Following Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Geoff Burrow @burrow_geoff
9K Followers 182 Following Husband to my beautiful wife, Irene, and Proud Dad and Grandad. Fighting to find a Treatment and Cure for MND - we are SO CLOSE 👍👊🤞
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.
Rosie Giglia @Rosie_Giglia
16 Followers 86 Following PhD student @NeurologyTcd | Exploring EEG markers of cognitive dysfunction in MS | Passionate about science education and outreach | views my own
Laura Andreasen @Laumarie5
40 Followers 432 Following
Caroline Purslow @CarolinePu45851
0 Followers 2 Following
Shahla Croxford @ShahlaBaghesta1
24 Followers 86 Following Retired physiotherapist . Humanity is most important . Campaigner to End Motor Neurone Disease since 2022 . NHS is a human right .
Richard Evans @RichardJaEvans
2K Followers 2K Following Director of Public Affairs at @ukfuturehealth. @PointofCareFdn trustee. Have written books about journalists Basil Clarke and Philip Gibbs.
Lake Gerbi @GerbiLake50376
105 Followers 5K Following
Ariella Kirsch @ariella_ki85480
71 Followers 5K Following
Tinley Talent @TalentTinl47094
77 Followers 5K Following
christine @Cris780195
1 Followers 44 Following
Kielan Arblaster @kielankielan
492 Followers 753 Following Policy Manager @mndassoc. Former Senior Policy Officer @alzheimerssoc. Views (and contentious likes) my own
Bertie Hobart @BertiHob
63 Followers 5K Following
Mihir ☀️ @mihird9
199 Followers 2K Following Programmer | Average WSL/Linux enjoyer ® | Larry David Stan | Always be learning
Blue Sky Effect @BlueSkyEffect
8K Followers 6K Following Drummer for BBC Introducing band The Levy Circus and solo artist https://t.co/bspeSVcDTq https://t.co/5Tvjovrrp1
Ankur Kumar @AnkurKu68142441
16 Followers 202 Following
KS @kimu_dot_info
83 Followers 93 Following How to stroll into academia, how to thrive in academia, and how to get the h*ll out of academia. Whichever makes your boat float. (focused on life sciences)
Polymenidou Lab @PolymenidouLab
966 Followers 339 Following Our research is focused on understanding the molecular mechanisms leading to ALS and FTLD 🧪🧠🧬
Craig Hopper @craighopper
344 Followers 2K Following
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
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.
MND Association @mndassoc
48K Followers 13K Following Our vision is a 🌎 free from 𝐦𝐨𝐭𝐨𝐫 𝐧𝐞𝐮𝐫𝐨𝐧𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 #MND
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.
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.
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.
Sarah Nauser @SarahNauser
12K Followers 516 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
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.
MND Research @mndresearch
13K Followers 511 Following Research Development team at the Motor Neurone Disease Association of England, Wales & NI. We fund and promote cutting-edge #MND research & organise #alsmndsymp
Ammar Al-Chalabi @AmmarAlChalabi
5K Followers 4K Following Professor of Neurology and Complex Disease Genetics, King's College London. Co-Director UK MND Research Institute https://t.co/CR2sIAKgHI #MND #ALS Specialist.
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
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.
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.
Hande Ozdinler @DrOzdinler
27K Followers 716 Following Neuroscientist, Scientist, Mother, Poet, Press member, Inventor of OzdinART Our research will help end ALS, HSP and PLS.
Mandi @RunningMama0522
2K Followers 1K Following
Jean C9orf72 @Jeanc9orf72
1K Followers 855 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
Barney Bryson @DrBarneyB
87 Followers 95 Following
Chris Chatham @chchatham
2K Followers 4K Following Sorting the universe of possible medicines for the mind: I use computational, cognitive and developmental neuroscience in the service of therapeutic discovery.
Adriana Zardini Buzat.. @dri_buzatto
68 Followers 196 Following Assistant Professor at @ucalgary | Lipidomics, Metabolomics, LC-MS | 🇨🇦🇧🇷
OrrLaboratory @OrrLaboratory
267 Followers 345 Following Studying #Dementia #Astrocytes #Mitochondria Neurotherapeutics. Pursuing audacious team-based science, helping trainees achieve their highest potential #PhDlife
M4K Pharma @M4KPharma
446 Followers 23 Following Open Science for Children's Health | Medicines4Kids: Developing an affordable cure for DIPG - a rare children's brain cancer | Open Source Drug Discovery |
n-Lorem Foundation @n_lorem
1K Followers 572 Following Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
Cycle2Spain4MNDA @cycle2spain
286 Followers 163 Following From April 10 – 28, 2015 Andy Cook and Howard Fine cycled 1700 miles from the Wirral to Mojacar to raise funds for the Motor Neurone Disease Association.
Christopher Southan @cdsouthan
733 Followers 793 Following Data Scientist at MDC, ORCID 0000-0001-9580-0446. Enjoys dot-joining between chemistry and biology https://t.co/CwOz3Iztyk, views yours truly
Shahla Croxford @ShahlaBaghesta1
24 Followers 86 Following Retired physiotherapist . Humanity is most important . Campaigner to End Motor Neurone Disease since 2022 . NHS is a human right .
NICE @NICEComms
254K Followers 1K Following Official feed of NICE - National Institute for Health and Care Excellence. We produce evidence-based health and social care guidance. Tweets by the comms team.
Kielan Arblaster @kielankielan
492 Followers 753 Following Policy Manager @mndassoc. Former Senior Policy Officer @alzheimerssoc. Views (and contentious likes) my own
Blue Sky Effect @BlueSkyEffect
8K Followers 6K Following Drummer for BBC Introducing band The Levy Circus and solo artist https://t.co/bspeSVcDTq https://t.co/5Tvjovrrp1
N KDugar @KdugarN
35 Followers 162 Following #indian #trader , markets ! expressing thoughts which would take our country towards a better growth 📈
Asha Ek Hope @AshaEkHope
247 Followers 123 Following Non-profit Foundation for Lou Gehrig's Disease/ALS; patient support, latest news in #ALS community and research
Taylor Dick @TaylorJMDick
2K Followers 1K Following Scientist & Senior Lecturer @UQMedicine Uni of Queensland | lover of all things that move | bio+neuro+mechanics | wearable tech | @BRInCprogram 🇨🇦in🇦🇺
Berry Consultants @BerryConsultant
615 Followers 13 Following We are a statistical consulting company specializing in innovative clinical trial design, Bayesian analysis, clinical trial execution, and software solutions.
Stephanie🌻 @_prettyinpurple
6 Followers 61 Following A rare millennial not 100% comfortable with an open twitter profile
Ben Clarke @Ben_ClarkeUK
373 Followers 724 Following Postdoc interested in glia in motor neuron disease @PataniLab @TheCrick @UCLIoN
NeurologyLive® @neurology_live
9K Followers 670 Following Delivering healthcare professionals treating neurological diseases quality and relevant information to help achieve the best patient care possible. #MindMoments
Raj @rajgodhuli
772 Followers 549 Following Researcher and Teacher. Interested in mRNA translation and decay. @mkbhavuni78; @officialPU; PhD @ccmb_csir; Postdoc @UArizonaMCBio Love cricket and music.
Matti Allen @Matti_D_Allen
102 Followers 490 Following Neuromuscular Medicine Fellow (2023-2024) at The Ohio State University; MD Queen's University; PhD The University of Western Ontario
PharmAust @PharmAust
2K Followers 5K Following PharmAust is a clinical-stage biotech company focused on repurposing monepantel (MPL) for human neurodegenerative diseases ASX: $PAA FSE: $ECQ
Amsterdam City Swim @AmsterdamCitySw
2K Followers 220 Following Wij zwemmen op 6 sept 2020 samen tegen de ziekte ALS! Zwemevenement in de Amsterdamse Grachten
Eva Woods @EvaWoodsTCD
96 Followers 311 Following Mc Mackin Lab Ph.D. Student at Trinity College Dublin 🧠 studying ALS and Huntington's disease using EEG, TMS and MRI | Member of NSI’s ECRN|
Tom Fitz 👨🏻�.. @_wobblewobble
518 Followers 428 Following I’m just a guy fighting ALS the best I can, tweeting about all things programming 👨💻and my toddler 👼
Sarah Marzi @sj_marzi
4K Followers 2K Following Senior Lecturer and @UKDRI Group Leader @KingsIoPPN #epigenomics #neurodegeneration 🧬🧠
Arthur @ArthurButcher44
1K Followers 718 Following Enjoy all #motorsports🏎️🏍️, #gardening💐,. #photos all my own unless retweets? …#MND/#ALS…cure desperately needed now!! my daughter🙏🏼
Florentine Barbey @Flo_rissante
96 Followers 329 Following PhD in cognitive neuroscience, digital biomarkers, remote brain recordings, my own views. You will find here work related posts and cute animal videos.
Sterre de Boer, MD @SterredeBoer1
907 Followers 909 Following PhD student at the Alzheimercenter Amsterdam 🧠 | FTD | Neurology | Genetics 🧬 | Psychiatry | Neuroscience | Research Coordinator of DIPPA-FTD
Dr Liam Knox @LiamKnox92
246 Followers 246 Following SITraN Research Fellow * Health Psychology PhD. * telehealth * self-management * long-term conditions * motivation
Jill Brattain @MommaJillB
546 Followers 558 Following Love my family, love my life, but most of all, Love God. Victim of the ALS beast. Miss my best friend.
Laura Fenlon PhD @LauraRoseFenlon
1K Followers 533 Following Australian neuroscientist 🇦🇺 🧠 @UQmedicine researching the development and evolution of the cerebral cortex with the kind help of some marsupials 🦘🧬🔬
Matisse Jacobs @MatisseJacobs
30 Followers 33 Following
Rosie Giglia @Rosie_Giglia
16 Followers 86 Following PhD student @NeurologyTcd | Exploring EEG markers of cognitive dysfunction in MS | Passionate about science education and outreach | views my own
TOURNEZY Jeflie @TJeflie
16 Followers 98 Following PhD student in neuroscience. Study Amyotrophic Lateral Sclerosis and the potential therapeutic effect of the X protein of the Bornavirus in ALS mice.
Baroness boosted and .. @DrRachie
9K Followers 3K Following ALS/ageing researcher, skeptic, photog. Makes tellurian proteins in what appears to be box of mistaken temperament. Photog: @TwitchyRachie Lab: @brain_chem_labs
Marjorie Metzger @MetzgerMarjori
28 Followers 62 Following Researching cognitive impairment in #ALS using HD #EEG, funded by the Latran foundation, in @tcddublin, @NeurologyTcd
AC Immune @AC_Immune_SA
446 Followers 129 Following Leading the Way in the Treatment of Neurodegenerative Diseases
Heather Evans Muffitt @HMuffitt58208
2 Followers 16 Following Hockey Mum and wife, English Teacher, ALS FUNdraiser (over $145,000 and counting for ALS Society of Canada!)
Albert Lee @bertylee_
412 Followers 626 Following Medical researcher | educator | cyclist | drip-coffee enthusiast | bow-tie snob | husband and father. tweets express my views
Thomas Walker @TomWalker281
148 Followers 219 Following PhD candidate @UOW | ALS and Neurodegeneration | LLPS | optogenetics | Dhawaral Country | he/him | views are my own
Shamchal Bakavayev @ShamchalB
15 Followers 149 Following Postdoctoral fellow at @NIH || Focusing on ALS disease || Interested in Gene Editing: PE & BE
Beya Sarraj @SarrajBeya
91 Followers 520 Following MSc Student in Neuroscience and Biotechnology | Euro-Mediterranean Master in Neuroscience 🧠
Ayala Lab @AyalaLab1
330 Followers 267 Following We focus on understanding the molecular mechanisms that regulate the function of the RNA binding protein TDP-43 in health and disease
MND Iceland @IcelandMnd
202 Followers 180 Following
Claire Troakes @ctroakes
159 Followers 177 Following Senior Lecturer in Neuropathology. King’s College London Brain Bank Manager @LNDBrainBank , Neuroscientist. All views my own.
@Jaynes__World @dsetters @UKMNDRI @mndassoc @MNDoddie5 @DarbyRimmerMND @MNDScotland @IMNDA @AmmarAlChalabi @Daily_Express @CharlotteHawkns @GOVUK Happy birthday Dave you remarkable man. 😊
Emerging role for sphingolipids in the genetics of #ALS | Neurodevelopmental & genetics combine into a multistep process to critically underlie the variability in phenotypes. Unravelling preclinical phases represents the next complex undertaking @magxcite jnnp.bmj.com/content/95/2/1…
Authors of this study show that recurrent de novo SPTLC2 variant causes childhood-onset amyotrophic lateral sclerosis (ALS) by excess sphingolipid synthesis jnnp.bmj.com/content/early/… @MuseerSphinx
Many cheers to Ronenn Roubenoff for representing ETL, our movement for the millions globally at risk for inherited ALS and FTD, and his late wife @BarriFalk at the #WorldOrphanUSA conference!
@LorriCav We do most weeks. Conversation is regular & more than cursory. Here in Europe I work actively with 13 to 20 of the most influential, published & talented global #als #mnd researchers as part of work with @UKMNDRI formed after #united2endmnd research campaign since 2020. BW Lee
One aspect of this that seems under studied is the way placebo preserves the blind. In a well controlled trial participants would have no reason to assume they were on drug. (Assuming you are on drug means blind was compromised). With no or low placebo ratios blinding is gone.
What is a placebo? 💊 A placebo is a ‘dummy drug’ which looks and tastes the same as the treatment being tested. Placebo groups are used in clinical trials to ensure any beneficial effects observed are entirely down to the treatment. #ClinicalTrials101
I have no wish to leave this valley of tears today, but if that happens, let it be known that I was a honest scientist. In >40 years of science, I have been wrong, sloppy, lazy, insufficiently vigilant/competent, and much more - but I was never dishonest.
Thank you to our sponsors of the 2024 ALS Canada Research Forum for your generous support of the 3-day event that connects the brightest minds in Canadian #ALS research to share knowledge & progress toward #aWorldFreeOfALS. @MTP_CA @AmylyxPharma @biogen @QurAlisCo
So true and agree @Tanyacurry2 this needs addressing urgently for those who are eligible for Tofersen. Do you have any thoughts on being denied a second treatment for mnd (Proleukin) due to @mndassoc and other Consortium members agreeing a deal with ILTOO as well? #attackmnd
We'd like to see an urgent review of the cost threshold NICE uses to judge whether new drugs should be approved for the NHS. It’s appalling that people with MND face being denied what could be a life-changing treatment because of the outdated systems for approving medicine.
Tofersen is an effective therapy for the 2% of people with #ALS #MND who carry a genetic variation in their SOD1 gene. Whether it is available in the UK depends on a cost threshold and assessment by @NICEComms. The system is outdated: theguardian.com/society/2024/a… @UKMNDRI @mndassoc
link.springer.com/article/10.100… Abundant transcriptomic alterations in the human cerebellum of patients with a C9orf72 repeat expansion.
Note that people with ALS in the US on Relyvrio as of April 4 should have a discussion with their ALS providers to discuss risks/ benefits of continuing and if they want to continue, they should contact the AMYLYX Care Team ( ACT).
When asked for their reaction to the poor phase 3 results for the drug AMX005—which has since been pulled from the market—#ALS specialists responded almost universally with one word: disappointment: bit.ly/3vTbYo2 #NeuroTwitter @JinsyMd @PaganoniMDPhD
As the end of National Volunteer Week approaches, today, we wish to share a heartfelt thank you from our staff, as we recognize and celebrate the incredible work volunteers do to support our mission, raise funds, and contribute to #aWorldFreeOfALS. #NVW24 #EveryMomentMatters
In the fight against ALS, every single voice matters…even the little ones ❤️ #endALS
Join ALS Canada, on May 2 at 1:00 pm ET, for ALS Clinical Trials Unboxed. This month, Erin Fleming, Vice-President, Research and Development at ProJenX will present on a Phase 1 clinical study to evaluate prosetin for ALS. To register for webinar, visit bit.ly/448mOTY.
Nice summary of T-cell therapies (yes, plural) for ALS... als-mnd.org/support-for-pa…
Don’t forget…ALS Office Hours tomorrow at 1 ET! I’ll be moderating tomorrow’s discussion, so make sure to join us! Everyone is welcome! Bring your questions or just sit and enjoy the conversation! For more information and the zoom link, please visit Officehoursals.com
#ResearcherSpotlight💡 Inherited #MND, where there is a family history of the disease, affects up to 1 in 10 people. @JadeHoward0 from @neuroshef is developing a decision aid which can support people with MND and their families make choices about genetic testing. Hear more ⬇
Absolutely thrilled for the invitation to join @End_The_Legacy and @LesTurnerALS to discuss genetic and inherited #ALS and how to talk to youth about it. The lineup is amazing- will be a powerful summit!
This will be an amazing experience for anyone impacted by genetic or inherited ALS or FTD who wants to be more empowered. What a lineup of speakers and presenters! Learn more and register here: endthelegacy.org/communitysummit
This National Volunteer Week, we’re highlighting some of our incredible volunteers who know that every moment matters, and we are grateful for their contributions. Today, we feature Erica Daly, a member of ALS Canada’s Walk to End ALS Volunteer Committee. “I’ve always been a…
@ALSCanada Thank you Alyssa, for your generous gift and time, talent and treasure to support the cause and the organization. We are fortunate to have dedicated volunteers like Alyssa who do so much to create a world free of ALS/MND.
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