ALS/MND Alliance @ALSMNDAlliance
A World Free of #ALS #MND als-mnd.org Facebook: /TheIntlAlliance Joined May 2013-
Tweets8K
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Warning: Websites and social media are full of claims with high promises for ALS/MND treatments. Read about ten red flags you should watch for from #ALSUntangled ow.ly/8YN850Q1rFk Protect yourself and others from the spread of misinformation. #ALSMNDWithoutBorders
Interested to see just how amazing the Allied Professionals Forum (APF) is? The 2023 recordings are now available on our YouTube channel: ow.ly/YcZa50RllLM Plan to join us this year December 4-5 in Montreal, Canada.
🪣 The Ice Bucket Challenge turns 10 this year: A global phenomenon that provided people everywhere a way to demonstrate their support for the fight against ALS/MND and raise funds for the cause. #EveryAugustUntilACure #ALSMMNDWithoutBorders
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 The system is outdated: theguardian.com/society/2024/a… @UKMNDRI @mndassoc
Thank you for making our Hope Through Caring Gala a huge success! We raised nearly $700,000 toward care and support for people living with ALS, their caregivers and families, as well as research into the causes, treatment and cures for the disease. buff.ly/3xQGGib
Some great news to round off the week - Doddie Aid has now officially raised over £5 million 🍾 When Rob Wainwright kicked off a virtual exercise challenge in the depths of lockdown 2020, who would've known it would've hit these heights?! Full story 👇 heraldscotland.com/news/24246002.…
Looking forward to listening to this recording! #ALSMNDWithoutBorders
Looking forward to listening to this recording! #ALSMNDWithoutBorders
🧠 Nuestro seminario web, Salud Mental en ELA, se llevará a cabo el 24 de abril. Con subtítulos en español. 🤗 Aún tienes tiempo para registrarte aquí: ow.ly/wuC950QMPjI
Fantastic webinar by ALS Canada youtube.com/watch?v=_dzywY… #ALS #MND #ALSMNDWithoutBorders
🧠 This webinar will provide tools and recommendations for people living with ALS/MND, their caregivers and youth. We will learn how to take care of our mental health upon diagnosis, how to deal with our emotions like guilt and anxiety. 🤗us02web.zoom.us/webinar/regist…
📣 Participants needed! 📣 Researchers @KingsCollegeLon have designed a new online intervention to help people with long-term physical health conditions, such as #MND #ALS, to help manage low mood and depressive symptoms. They want your thoughts ⬇️ mndassociation.org/research/get-i…
🌟 We're committed to upholding the Fundamental Rights of People with ALS/MND and Caregivers. Our heartfelt thanks to everyone who contributed their insights and perspectives to create and update them. 📝 We encourage you to read and share them widely: als-mnd.org/support-for-pa…
🎙️ In this webinar, we will learn more about the new assistive technology of voice banking. 🙌 Our thanks to Moderator, Sara Feldman, and our expert panel – Alicia Gibb, Monique Signorelli, Emily Kornman, and Norman MacIsaac. 📺 Watch it here: ow.ly/u4ec50R8bYa
SAVE THE DATE! We will be holding the 3rd Australian and New Zealand MND Research Symposium in Melbourne on Tuesday 27th and Wednesday 28th of August. An MND Connect session will also run on the Wednesday. Further information to come as we progress with the event.
🧠 Únete a nosotros el 24 de abril para nuestro seminario web, Salud Mental en ELA. Aprenderemos a cómo cuidar nuestra salud mental, cómo procesar nuestras emociones,, y cómo fomentar la motivación y otras actividades que brinden felicidad. 🤗us02web.zoom.us/webinar/regist…
Our Board member in Taiwan says that so far there are no reported impacts in the ALS Community from the earthquake. It serves as a stark reminder of how important emergency preparedness is anywhere in the world. Please proactively prepare: als-mnd.org/support-for-pa…
MND Scotland, the @mndassoc and @MNDoddie5 understand the continued frustration within the MND community that we are still awaiting publication of data from the MIROCALS trial, and we share that frustration. Read our full statement here👇 mndscotland.org.uk/news/mnd-chari…
Thanks to @patrick_j_short and @sanogenetics for the great conversation!
Thanks to @patrick_j_short and @sanogenetics for the great conversation!
🧠 This webinar will provide tools and recommendations for People living with ALS/MND, their caregivers and youth. We will learn how to take care of our mental health upon diagnosis, how to deal with our emotions like guilt and anxiety. 🤗ow.ly/Hga550QMOMJ
📧 SUBSCRIBE TO OUR BI-MONTHLY NEWSLETTER! 🖋️ Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations. 📰 als-mnd.org
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
MND Association @mndassoc
48K Followers 13K Following Our vision is a 🌎 free from 𝐦𝐨𝐭𝐨𝐫 𝐧𝐞𝐮𝐫𝐨𝐧𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 #MND
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.
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
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.
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.
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.
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
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.
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.
Rob Burrow CBE @Rob7Burrow
199K Followers 2K Following Proud owner of the Autobiography of the year 2022. You can get it at all book stores or Amazon. #toomanyreasonstolive Number 1 Sunday times best seller!
Sally Light @sallylight17
3K Followers 421 Following Previously Chief Executive of the MND Association. Ongoing supporter of the MND community. Pond swimmer and yoga student. Views my own.
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)
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.
Seth Poling @SethPoling10
5K Followers 392 Following Wild & Wonderful WV. FSU grad. Married to @erika_poling , Father to Liam & Bayler, ALS Warrior & advocate. #EndALS Founder of @project_seth
Jayne Halhead 🌹 @Jaynes__World
6K Followers 4K Following In memory of my Dad, a burly #Lancashire dairy farmer, I'm raising awareness of motor neuron disease #MND/#ALS #MND #MoreNeedsDoing! Championing #Lancashire
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research 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.
Eve Giffard @EvieGiffard
36 Followers 552 Following
Ivo Couto @lopespacheco
0 Followers 5 Following
Skydoge @skydogenet
3K Followers 3K Following Peer-to-peer Advanced Wowfare System The swiss army knife of decentralized crypto currencies 1st Layer 1 mainnet implementation of Drivechain BIP300 & BIP301
Daphne Velinos @DVelinos
117 Followers 149 Following cultural end of life educator ~ dignity in life and end of life / diversity,equity & inclusion /addiction harm reduction. Views My Own ( she/her)
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.
Canan Bektaş @oroperi2
45 Followers 1K Following
Nesrin Kaya @kayanesrin984
10 Followers 56 Following
Tanner Hockensmith @Tannerhock
213 Followers 241 Following
Pedro Assed @pedroassed
1K Followers 3K Following Magnus est qui se vincit. MD, MSc-Endocrinology-Federal Univ. Rio de Janeiro/UFRJ 🇧🇷Tweets are my own. RT is not endorsement #MedEd
Courtney Cameron @Courtne97992242
3 Followers 11 Following
Ibeloved @merricksy
197 Followers 626 Following Cardiac RN, ALS Clinic Coordinator, Music Lover 🎶🎵, Food aficionado🥓🥑, Cat Servant 🐈🐾 (All views do not reflect that of my employers)
salim megat @SalimMegat
2 Followers 26 Following Involved in genetics and epigenetics research on amyotrophic lateral sclerosis #ALS #MND and fronto-temporal dementia #FTD #FTLD
Shane Hartmann @shadohrealm
44 Followers 231 Following Father of two boys and Program Manager at Kyndryl. Love my Parramatta Eels, Sci-Fi and all things Food. Opinions are all my own
Katrina Abel @kma020577
0 Followers 10 Following
EPNS @EPNSnews
3K Followers 3K Following European Paediatric Neurology Society (EPNS): a society for physicians, health professionals, scientists and students with an interest in Child Neurology.
cath @cathbailey1514
11 Followers 304 Following Disabled 50+ person, happy with my little family and two Bulldogs and plodding on with life. keep smiling.
Çetin OktayM @COktaym
42 Followers 88 Following
Fazlı @fazlibesli
12 Followers 228 Following
Aida Z @AidaZ7373
0 Followers 2 Following
Philip LANGAT @PhilipLANG75975
35 Followers 27 Following
[email protected] @swmallett
12 Followers 18 Following
Farah M 🇩🇿🇧�.. @farah_y_m99
20 Followers 115 Following PhD student @neuroshef studying DNA/histone methylation and one-carbon metabolism in MND/FTD | Previously @IHAatUCL 🪰 and @KingsIoPPN
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.
christine @Cris780195
1 Followers 44 Following
Caroline Purslow @Caroline_Purs
4 Followers 79 Following Global Health & Innovation @Challenge_Works & @Nesta_UK, Former @UKHSA. Designing a global challenge prize for #MND #ALS.
marion kavanagh @marion2308xx
116 Followers 465 Following
Tasiranlito @Tasiranlito
4 Followers 103 Following
Cansecret @Cansecret18
43 Followers 115 Following
#DucksforDementia @ducks4dementia
538 Followers 4K Following Ducks4Dementia was started in 2023 by a 5th grader to raise awareness about Dementia by donating toy ducks to Nursing Homes and $ for the Alzheimer's Foundation
Eikonizo Therapeutics @Eikonizo
157 Followers 305 Following Envisioning an end to neurodegenerative and other diseases
Marissa @mari__wanna
8 Followers 80 Following Diagnosed with ALS at 31. Livin it up with terminal illness
C. Zhang @Hansen_010101
15 Followers 81 Following
Nirma Perera @perera_nir3741
40 Followers 122 Following
Sara Hanif Mirza, MD .. @sarahanifmirza
844 Followers 273 Following Pulm/Crit Care @UMIntMed @UMichMedicine | Passionate about #vents and addressing #pulmonary complications of #neuromuscular dx | Trustee @NBRC_tweets | OAMO
Gerry kidd @kidd_gerry
4 Followers 14 Following
Sarah Parton (she/her.. @sarahkarpar
1K Followers 940 Following A very proud Mom and Gigi. Married to the love of my life. Living with #ALS C9orf72. GenX, liberal AF, rock and roll is boss. Football is my favorite season.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
MND Association @mndassoc
48K Followers 13K Following Our vision is a 🌎 free from 𝐦𝐨𝐭𝐨𝐫 𝐧𝐞𝐮𝐫𝐨𝐧𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 #MND
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.
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
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.
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.
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.
My Name'5 Doddie Foun.. @MNDoddie5
38K Followers 252 Following Registered Charity, established by Doddie Weir & friends to raise funds to aid research into Motor Neuron Disease & supporting fellow sufferers.
Rob Burrow CBE @Rob7Burrow
199K Followers 2K Following Proud owner of the Autobiography of the year 2022. You can get it at all book stores or Amazon. #toomanyreasonstolive Number 1 Sunday times best seller!
Sally Light @sallylight17
3K Followers 421 Following Previously Chief Executive of the MND Association. Ongoing supporter of the MND community. Pond swimmer and yoga student. Views my own.
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)
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.
Jayne Halhead 🌹 @Jaynes__World
6K Followers 4K Following In memory of my Dad, a burly #Lancashire dairy farmer, I'm raising awareness of motor neuron disease #MND/#ALS #MND #MoreNeedsDoing! Championing #Lancashire
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.
Jean C9orf72 @Jeanc9orf72
1K Followers 855 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
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 Ahmad Al-Khleifat @AhmadAlKhleifat
2K Followers 351 Following Clinician and Scientist interested in ALS genetics. King’s College London @kingsmnd
Lee Millard @onein300
2K Followers 901 Following 1/300 is the lifetime risk of developing #ALS #MND. My living with Motor Neurone Disease blog.
MND Scotland @MNDScotland
8K Followers 2K Following Making time count for people with motor neuron disease (MND).
Sue Nelms @SueNelms1
267 Followers 622 Following These days a full-time carer and Anglican Licensed Lay Minister. Before that did various things totally unrelated! Not always entirely sensible!
Suvankar Pal @suvankarpal
2K Followers 1K Following Professor of Neurodegenerative Disorders & Clinical Trials @mndsmart @AnneRowlClinic @EdinUniBrainSci #forthvalleyneurology @nhsforthvalley
Mashkawizii @NISHwmn
701 Followers 2K Following Anishinaabe kwe, #ALSWarrior Advocate V4-2Stroke kickstarter at heart,Yogi, guzzler of Green Tea, 997 C4 summer shifter, living with ALS/C9orf72
Avril Mc Tague @avrilmctague
164 Followers 590 Following Physiotherapist interested in neurology and gerontology. PhD student in motor neuron disease. All views are my own. RT does not mean endorsement.
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.”
Hồ Quang Thịnh @hqthinh95
80 Followers 580 Following
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
Emma Terry @EmmaLaytonTerry
88 Followers 151 Following
Brain Research UK @BRUKresearch
3K Followers 1K Following If our brain breaks down, we break down. Let's unite to accelerate the progress of brain research and help people live better, longer.
Frédéric Destrebecq @BrusselsDC
590 Followers 499 Following
European Brain Counci.. @EU_Brain
8K Followers 2K Following EBC is a platform for patients, health professionals, scientists & industry that promotes brain research in Europe and improved quality of life for patients.
Mahmoud Bukar Maina P.. @mahmoudbukar
3K Followers 2K Following #Alzheimer's #iPSC 👨🏾🔬 @SussexNeuro & @BioRTCNig |💰 @alzassociation & @RCFNeuro | Science Adviser #Yobe State | Founder @BioRTCNig |Director @TReNDinAfrica
Jodi Allen @JodiAllenSLT
4K Followers 2K Following Clinical Specialist Speech & Language Therapist in Progressive Neurological & Neuromuscular Disease @NHNN_therapies | #NIHR #CDRF Award Holder @CMI_UCL
Ian soo @scian_
112 Followers 135 Following Pulmonologist working on NIV, Pulmonosonographerlogist 🛜 (EBUS, EUS-B, Lung, Diaphragm) .. Gadgets are my favourite.. Views are my own
IBRO - International .. @IBROorg
20K Followers 4K Following Global neuroscience societies' association: supporting neuroscience education, research & outreach worldwide Journals: @NeurosciIBRO & IBRO Neuroscience Reports
A pALS Journey @berttyih_als
563 Followers 393 Following ALS Warrior & LIFE student as a father, a son, a brother and a husband to my beloved caregiver !
BSMS @BSMSMedSchool
5K Followers 603 Following Celebrating 20 years of Brighton and Sussex Medical School, an equal partnership between @SussexUni & @uniofbrighton together with #NHS organisations.
QM Neuroscience @QMneuroscience
331 Followers 221 Following Neuroscience teaching and research at Barts and The London School of Medicine and Dentistry
CHU de Nîmes @CHUNimes
7K Followers 690 Following Compte officiel du Centre Hospitalier Universitaire de #Nîmes #CHUdeNîmes. Actus de l'#hôpital, #santé #soins #recherche #prévention
Danielle Reinhart @RyansMom2
2K Followers 5K Following Mom of 4, research & advocacy, data science, knitter, she/her views=my own
MND Iceland @IcelandMnd
202 Followers 180 Following
VJ Neurology @VJNeurology
22K Followers 576 Following The Video Journal of Neurology is dedicated to providing up-to-date information and international expertise about #Neurology. #Headache #Epilepsy #MS #ALS
Edinburgh Neuroscienc.. @EdinUniNeuro
5K Followers 344 Following Edinburgh Neuroscience is a diverse community of world-class researchers in neuroscience, psychology & clinical psychology at the University of Edinburgh.
Milken Institute @MilkenInstitute
87K Followers 2K Following Catalyzing Solutions. Building Meaningful Lives. #MIGlobal
Joao winck @JoaoWinck
749 Followers 1K Following Respiratory Medicine senior consultant; Secretary Assembly 2 Respiratory Intensive Care ERS
Paul Melmeyer @PMelmeyer
601 Followers 305 Following VP of Public Policy & Advocacy at the Muscular Dystrophy Association (@MDAOrg) and Pittsburgh native and sports enthusiast. Opinions are my own. He/him
Catriona Grant @catriona_grant
46 Followers 170 Following
EndTheLegacy @End_The_Legacy
327 Followers 65 Following Patient led organization providing education and support , and advocating for, those impacted by Genetic ALS and FTD.
Ally Grant @allyegrant
249 Followers 1K Following 🇺🇦MND, exBBC, continual picker-upper of toys and small bits that hurt your feet.
Mary Dwight @MaryDwight
787 Followers 408 Following SVP of policy and advocacy @CF_Foundation. Tweets are my own. Get involved and sign up for #CFadvocacy action alerts!![World citizen, science nerd, Mom, [self-proclaimed] little Sardinian that could...](https://pbs.twimg.com/profile_images/560104438107348992/zcgoIUjw.jpeg)
Rachele Berria @rberria
163 Followers 240 Following World citizen, science nerd, Mom, [self-proclaimed] little Sardinian that could...
Naomi Fitzgibbon @FitzgibbonNaomi
146 Followers 173 Following Director of Nursing and Services Irish Motor Neurone Disease Association RGN,MSc,FFNMRCSI
Mike Tindall @miketindall13
241K Followers 685 Following 🏉 Former rugby player, full-time amateur golfer! ✉️ [email protected] for all enquiries
Doddie Aid @doddie_aid
10K Followers 505 Following From @MNDoddie5. Get active in January & raise funds for vital MND research. 💙💛
Pat Dolan @Team_Thriving
949 Followers 1K Following Mapper who is Striving to be Thriving with #ALS Author of the ALS Geospatial Hub - https://t.co/Po3Z3KCvuS #nohandsmapping
BJ Viau @BJsView
838 Followers 2K Following #HuntingtonsDisease Community Advocate. Entrepreneur. Passion to Help Others. Founder @HD_Genetics & Co-F @hdyofeed Viau’s Are My Own. Tommie Hoops Fan
Genetic Counselors @GeneticCouns
15K Followers 641 Following National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
NSGC International SI.. @NSGCiSIG
277 Followers 241 Following International Special Interest Group for NSGC Genetic Counselors. Check out our blog at https://t.co/GGOY0kejJs!
Sabine Turgeman @sabine_turgeman
35 Followers 184 Following
Finbar Furey @FinbarFurey
5K Followers 280 Following Singer, Songwriter, Musician, Composer, Arranger, Actor & proud Irish man. New album 'Moments In Time' Out Now.
UCL Brain Sciences @UCLBrainScience
23K Followers 1K Following @UCL Faculty of Brain Sciences is a global leader in research and education into the mind and brain. Follow us also on https://t.co/hegiQyx48p…
King's College London @KingsCollegeLon
152K Followers 2K Following News from King's College London | King’s is a multi-faculty research-led institution & one of the top 10 UK universities in the world | Contact: [email protected]
UCL @ucl
139K Followers 934 Following Sharing highlights of life at UCL (University College London), London’s leading multidisciplinary university. Follow @uclnews and @uclevents.
Tania Bubela @bubela_tania
2K Followers 833 Following Professor & Dean, Faculty of Health Sciences, Simon Fraser University. (She/Her) Health law & biotech policy; Loves BC Mountains. @[email protected]
E. Richard Gold @IP_policy
3K Followers 1K Following Patents, innovation, & open science /Recherche brevets, innovation, & science ouverte. @consciencemeds @richardgold.bsky.social
Sylvie Raver, PhD @DrSylvieRaver
596 Followers 1K Following Neuroscientist working in health & science philanthropy @MilkenInstitute. Biomedical strategy for mental health & neurodegenerative diseases @MIPhilanthropy
Wanda Gregory @mindfulgamer
40 Followers 14 Following Mindful Gamer • @UW Lecturer • @bbcdoctorwho • Virtual worlds, literature, television, film, shamanism, consciousness, mindfulness, and more.
@burrow_geoff My dad had MND and for me the awareness Rob, Dodie and Stephen have brought also means it's now less likely to be missed by GPs like it was in our case. As well as general public understanding we need more research. But as Geoff says we are all in it together
@alsadvocacy There is a huge difference between failing &failure. Failing is trying something that you learn doesn't work. Failure is throwing in the towel &giving up. True success comes from failing repeatedly and as quickly as possible, before your cash or your willpower runs out. Jay Samit
Are you attending #ENCALS this year? Members of the team will be attending and we can’t wait to hear and share the latest #MND #ALS research. 🔬 Not registered yet? Standard registration is open until 29 April ⬇️ encals.eu/meetings/stock…
Life ain’t easy, for anyone. I’ve been sitting with, and working through, emotions of sorrow recently. We are resurrected through the love and care of others to see the light within us. Gray. Gratitude.
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
This is simply heartbreaking.
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
Thank you, @melindagates, for a very good meeting on the sidelines of the spring meetings. We agreed that investing in health systems must be prioritized by finance ministers and regional development banks, and discussed the critical importance to #EndPolio, as well as our joint…
Did you know that you can watch all of our recorded ALS Town Halls in our ALS Town Hall Archive? Check them out on the ALS Town Hall page here: als.net/als-town-hall/
Truly brilliant - every single runner in the #londonmarathon2024 today. A special thank you to the fantastic @mndassoc team runners - the grit, determination, passion and drive from every single person, we’re so grateful and beyond proud 🧡💙
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
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Pleased to share the recording of the wonderful talk given by the generous @JanuceRobertson on the loss of function theory in C9orf72 disease! youtu.be/3axw9LXZYVM?si…
@alsadvocacy @ALSMNDAlliance @IcelandMnd @ALSTDI @WHO Some things that set apart ALS Trial Navigator are: Guided Trial Finder is designed to educate, including WHO registry trials, and clearly outlining interventional vs observational vs symptom mgmt.
@alsadvocacy @ALSMNDAlliance @IcelandMnd @ALSTDI @WHO Glad to chat if anyone would like to.
What did we tell our one “official” @bostonmarathoner who raised over $20,000 to support our mission and then devastatingly fractured her tibia just two weeks before race day? We told her the truth: how amazing she is and how her mom must be smiling from heaven at the (1/8)
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.
@mndresearch @IrishManInKent Thank goodness @sanogenetics will be on the scene soon!
@IrishManInKent Hi Aidan, we're sorry to hear about the delay in getting your genetic testing results back. We are aware there are significant delays and are working to consider how we can help remove barriers.
On my first visit to the Neuro Clinic in London, I gave blood for genetic testing back in November 23. Still no results. How long does it take?
#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 ⬇
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