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UK MND Research Institute

@ukmndri.bsky.social
137 followers 14 following 55 posts

A national network of MND centres that work together to understand how #MND happens, what treatment works, and test possible treatments in clinical trials.

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UK MND Research Institute @ukmndri.bsky.social · 10/08/2026
Update from EXPERTS-ALS: metformin and nifedipine do not lower NfL, a blood marker linked to how quickly MND progresses, so recruitment to that arm has stopped. Three other drugs, ropinirole, doxycycline and salbutamol, remain in active testing. Read more 👇 ukmndri.org/2026/08/10/e...
ukmndri.org
Metformin and nifedipine ruled out by EXPERTS-ALS
EXPERTS-ALS, the UK's rapid drug-screening platform for MND, has ruled out metformin and nifedipine after an interim analysis, a result researchers say proves the platform is working exactly as design...
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UK MND Research Institute @ukmndri.bsky.social · 27/07/2026
Join us for the 7th UCL Queen Square MND Centre ALS/MND International Symposium, in partnership with the UK MND RI. 📅 11 September 2026 | London & Zoom 🎟️ Free to register Speakers from Columbia, Oxford, Max Planck and more. Register below! www.eventbrite.co.uk/e/ucl-queen-...
eventbrite.co.uk
UCL Queen Square MND Centre 7th ALS/MND International Symposium
One-day conference on emerging themes in ALS/MND research and in the clinic.
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UK MND Research Institute @ukmndri.bsky.social · 24/07/2026
New University of Sheffield research could shift how apathy in #MND is recognised and managed in clinical care, with practical implications for both clinicians and carers. Supported by TiM-R participants. Read more 👇 ukmndri.org/2026/07/23/r...
ukmndri.org
Apathy in MND: New Research on Effort vs Motivation
New Sheffield research suggests apathy in MND is often about effort, not motivation, recruited through Join MND Research. Read the findings.
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UK MND Research Institute @ukmndri.bsky.social · 22/04/2026
Traditional clinical trials are essential, but for people with #MND, years of waiting isn't an option. EXPERTS-ALS uses short-term biomarker studies to identify promising treatments faster. Take a look at the first wave of drugs entering the platform. ukmndri.org/2026/04/22/b...
ukmndri.org
The first drugs entering EXPERTS-ALS — the UK's innovative MND treatment platform | UK MND Research Institute
EXPERTS-ALS is a UK-wide platform designed to rapidly test potential MND treatments. Meet the first three drugs — metformin, nifedipine, and ropinirole — now open to recruitment.
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UK MND Research Institute @ukmndri.bsky.social · 21/04/2026
@mndassoc.bsky.social Grants are now open across a variety of areas, including PhD studentships and research fellowships. If you're working in #MND research, this is your window. Take a look at the link below. Apply👇 www.mndassociation.org/research/for...
mndassociation.org
Apply for funding
Discover how the MND Association leads global research to find a cure. Explore our cutting-edge grants and see how we fund the best science to defeat MND.
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UK MND Research Institute @ukmndri.bsky.social · 12/03/2026
We're thrilled to announce that the drug RT1999 has been selected for EXPERTS-ALS. This is how we accelerate progress for people with MND. Participants are expected to receive the drug by the end of 2026. ukmndri.org/2026/03/10/n...
ukmndri.org
New MND drug selected for EXPERTS-ALS platform
Raya Therapeutic's smilagenin has been selected for EXPERTS-ALS. Read how this new drug could accelerate the search for MND treatments.
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UK MND Research Institute @ukmndri.bsky.social · 08/03/2026
Today, we are celebrating the women driving MND research forward, from the lab bench and clinical trials to patient advocacy and care. Progress towards a cure is built on their vital work. Happy #InternationalWomensDay2026🔬
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UK MND Research Institute @ukmndri.bsky.social · 24/02/2026
We're thrilled that the drug Neflamapimod has been selected for evaluation in our EXPERTS-ALS platform. 🧪 The drug will be tested on a small cohort of people living with ALS Read more below🔬 ukmndri.org/2026/02/24/n...
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UK MND Research Institute @ukmndri.bsky.social · 16/02/2026
Industry partners are vital collaborators in our mission to find crucial new treatments for #MND/#ALS. Our co-director, @ammaralchalabi.bsky.social, teamed up with Raya Therapeutics at TRICALS to lead a discussion on Repurposing and Combination Therapies. Read more 👇 ukmndri.org/2025/11/13/r...
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UK MND Research Institute @ukmndri.bsky.social · 12/02/2026
We're delighted to be attending #TRICALS Masterclass this year in Amsterdam. It's always fantastic to meet up with our international colleagues and collaborators to discuss how we can best accelerate #ALS clinical drug development.
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UK MND Research Institute @ukmndri.bsky.social · 21/01/2026
Three years after our launch, we’ve worked tirelessly to understand how and why MND occurs, identify promising treatments, and test them in clinical trials. Read about what we've achieved, together, in our first three years here: ukmndri.org/2025/12/17/u...
ukmndri.org
UK MND RI: Three Years of Progress in MND Research
Celebrating three years in MND research: building infrastructure, accelerating trials, and driving progress toward effective treatments.
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UK MND Research Institute @ukmndri.bsky.social · 12/12/2025
🎉We're thrilled to announce that our biosampling platform has recruited 212 participants, surpassing our target of 200. This work will be vital in bringing us closer to new and more personalised treatments for #MND/#ALS.🔎 ukmndri.org/2025/12/12/b...
ukmndri.org
UK MND RI biosampling platform passes 200 recruits
Our biosampling platform has recruited 212 participants, exceeding its target and advancing biomarker research..
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UK MND Research Institute @ukmndri.bsky.social · 05/12/2025
How are biomarkers are changing #ALS/#MND research?🔎 A new review from King's College London shows how specific biomarkers, such as neurofilament light chain (NfL), can accelerate trials and enable personalised medicine. 🔗 Read more 👇 ukmndri.org/2025/12/05/b...
ukmndri.org
Biomarkers in MND Clinical Trials
A new systematic review from KCL highlights how biomarkers, such as NfL, are enabling earlier treatment assessments and personalised medicine.
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UK MND Research Institute @ukmndri.bsky.social · 03/12/2025
New research reveals what people with #MND/#ALS need when deciding on genetic testing: clear info, implications for family & tailored support.📃 This data can help inform decision aids to assist people when thinking about genetic testing. Read more🔗 ukmndri.org/2025/12/03/g...
ukmndri.org
Genetic Testing: What People Need to Make Informed Decisions
A new study reveals what people with MND need when deciding on genetic testing, including clear information and tailored support.
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UK MND Research Institute @ukmndri.bsky.social · 27/11/2025
Our posters from ENCALS 2025 on findings from the MND Register are now published on our website. Click the link below to read about the epidemiological insights, incidence and prevalence, as well as gender differences in #MND/#ALS. mndregister.ac.uk/research-pap...
mndregister.ac.uk
MND Research Papers - MND Register
Findings from the MND Register project will be published here, as well as via a patient newsletter. Results will also be disseminated through scientific publication, conference presentation and patien...
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UK MND Research Institute @ukmndri.bsky.social · 21/11/2025
We've hit 100 sign-ups to our Remote Research Platform! Thank you to everyone who has signed up; together, we’re building a more inclusive #MND/#ALS research community. 🔗If you haven't joined, sign up below! ukmndri.org/research/und...
ukmndri.org
Get involved in MND research from home - UKMNDRI
Get involved You can now take part in MND research without having to travel. In collaboration with researchers at the University of Sheffield, we’ve created a secure online platform that makes it s...
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UK MND Research Institute @ukmndri.bsky.social · 14/11/2025
Drug development is a complex and costly process. By using medicines approved for other conditions, we can overcome barriers in drug development. Read our blog explaining why we believe repurposed drugs could help us find new treatments for #MND/#ALS. ukmndri.org/2025/11/13/r...
ukmndri.org
Repurposed Drugs: Accelerating MND Treatment Discovery
Discover how repurposed drugs are helping accelerate the search for effective treatments for MND through innovative UK research.
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UK MND Research Institute @ukmndri.bsky.social · 13/11/2025
Yesterday, we attended @mndoddie5.bsky.social's Discovery Network Showcase 2025. Researchers, clinicians, industry partners, and people affected by #MND/#ALS discussed how the network can drive forward progress in better understanding MND and the development of new treatments.
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UK MND Research Institute @ukmndri.bsky.social · 05/11/2025
Our Co-Director, Prof. @ammaralchalabi.bsky.social, gave a fantastic talk yesterday, hosted by @mndassoc.bsky.social, on #MND/#ALS genetics, why they matter and how discoveries are shaping new treatments. Thank you to everyone who joined in person & online! #MNDresearch #genetics
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UK MND Research Institute @ukmndri.bsky.social · 24/10/2025
New research finds that #MND/#ALS may slow molecular transport and nerve cell growth before cells begin to die. These early changes could hold clues to how the disease starts and how to treat it. ukmndri.org/2025/10/24/e...
ukmndri.org
Cellular changes in sporadic ALS may reveal new treatment targets
A new study suggests that MND may slow molecular transport and cell growth before nerve cells die. This could help identify new therapeutic targets.
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UK MND Research Institute @ukmndri.bsky.social · 21/10/2025
A new UK-wide study finds that people who experience a traumatic brain injury may face a higher short-term risk of developing MND. This risk appears temporary, suggesting injury may sometimes be an early consequence of undiagnosed disease. Read more👇 ukmndri.org/2025/10/21/t...
ukmndri.org
Traumatic brain injury linked to short-term MND risk
A new study finds traumatic brain injury linked to a short-term rise in MND risk, suggesting this may reflect early disease signs, not cause them.
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UK MND Research Institute @ukmndri.bsky.social · 06/10/2025
We’re deeply sorry to hear that former England rugby captain Lewis Moody has been diagnosed with MND. His courage in sharing his diagnosis will raise vital awareness. Our thoughts are with Lewis and his family. We must find an effective treatment for #ALS/#MND. www.bbc.co.uk/sport/rugby-...
bbc.co.uk
Lewis Moody: Former England captain reveals motor neurone disease diagnosis
Former England captain Lewis Moody says in an exclusive BBC interview he has
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UK MND Research Institute @ukmndri.bsky.social · 26/09/2025
This is fantastic news and highlights the importance of consistently funding collaborative science in neurodegenerative diseases. We are committed to doing the same for #MND/#ALS and finding new ways to successfully treat the disease. www.bbc.co.uk/news/article...
bbc.co.uk
Huntington's disease successfully treated for first time
One of the most devastating diseases finally has a treatment that can slow its progression and transform lives, tearful doctors tell BBC.
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UK MND Research Institute @ukmndri.bsky.social · 08/09/2025
Sign up now to a special symposium in memory of Euan MacDonald MBE, hosted by the Euan MacDonald Centre for #MND Research. 📍 Edinburgh 📅 8–9 October 🔬 Cutting-edge MND/ALS research 🌍 Public sessions on SpeakUnique & Euan’s Guide euanmacdonaldcentre.org/euan-macdonald-tribute-symposium-2025
euanmacdonaldcentre.org
A tribute to Euan MacDonald: celebrating the Euan MacDonald Centre and Euan's legacy
A 1.5-day symposium showcasing current MND research, and a celebration of Euan's legacy, including Euan's Guide and SpeakUnique.
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UK MND Research Institute @ukmndri.bsky.social · 04/09/2025
Fatigue affects nearly all people with #MND/#ALS, yet it's often overlooked. A new UK-wide study reveals how fatigue evolves, its severity, and its link to other symptoms. This can inform future research and care. 🔗Read more👇 ukmndri.org/2025/09/04/f...
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UK MND Research Institute @ukmndri.bsky.social · 03/09/2025
One of Raya Therapeutic's compounds has been selected for our EXPERTS-ALS programme. A pioneering initiative designed to fast-track promising treatments for #ALS/#MND. Read more about the story and why it is so significant below👇 ukmndri.org/2025/09/03/r...
ukmndri.org
Raya Therapeutics compound selected for EXPERTS-ALS platform
Raya Therapeutic’s ALS/MND compound joins the UK EXPERTS-ALS trial, aiming to accelerate development of a new promising treatment.
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Reposted by UK MND Research Institute
Longitude Prize on ALS @longitudeprize.bsky.social · 05/08/2025
🧠 The @ukmndri.bsky.social is an #MND powerhouse, accelerating progress towards new treatments and, ultimately, a cure. Read their article about how the #LongitudePrizeOnALS could be a game-changer for drug discovery in neurodegenerative diseases. 🔗 bit.ly/40Tmmsh @ammaralchalabi.bsky.social
ukmndri.org
Longitude Prize launched to accelerate AI-driven drug discovery
A new international challenge prize has been launched to transform drug discovery for ALS, the most common form of MND through AI.
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UK MND Research Institute @ukmndri.bsky.social · 28/08/2025
A new study has identified a blood-based biomarker panel that can detect #ALS up to a decade before symptoms appear. Using machine learning and protein profiling, researchers found 33 proteins that distinguish ALS from other conditions. ukmndri.org/2025/08/28/2...
ukmndri.org
Protein signature could predict ALS a decade early
A new study has identified a blood-based protein signature that may predict ALS up to ten years before symptoms appear.
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UK MND Research Institute @ukmndri.bsky.social · 20/08/2025
A simple finger-prick blood test could transform how #MND/#ALS is monitored. New research from @ucl.ac.uk shows that NfL levels from capillary samples match those from traditional blood draws, suggesting a more convenient and less invasive way to sample blood. ukmndri.org/2025/08/20/f...
ukmndri.org
Finger-prick blood test could offer less invasive monitoring in MND
A simple finger-prick blood test could revolutionise how motor neuron disease and other neurological conditions are monitored.
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UK MND Research Institute @ukmndri.bsky.social · 31/07/2025
The first treatment for a form of #MND/#ALS has been approved in the UK. #Tofersen is authorised for SOD1 MND, demonstrating the potential of gene-targeted therapies. UKMNDRI RI partners @sheffielduni.bsky.social & @kingsioppn.bsky.social contributed to the trials. ukmndri.org/2025/07/31/f...
ukmndri.org
First treatment approved in the UK for rare genetic form of MND - UKMNDRI
The MHRA has approved the use of tofersen, the first licensed treatment in the UK for MND caused by a variation in the SOD1 gene.
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UK MND Research Institute @ukmndri.bsky.social · 28/07/2025
We're thrilled to see the first research nurse recruited to the @mndassoc.bsky.social’s new #MND Research Nurse Network. The network will be essential in providing the support and expertise needed to create equitable access to trials for all🔎 Read more 🔗 www.mndassociation.org/media/latest...
mndassociation.org
First nurse recruited into MND Association’s Research Nurse Network
The ambitious £7.2 million Research Nurse Network will give more people diagnosed with motor neurone disease (MND) the opportunity to take part in vital research
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UK MND Research Institute @ukmndri.bsky.social · 16/07/2025
New research has examined how disrupted sleep patterns may signal the early stages of #MND / #ALS or FTD, providing clues to earlier detection. Read more ⬇️ 🔗 ukmndri.org/2025/07/16/r... This post is part of our Research Snapshot series, powered by Readable Research at @sheffielduni.bsky.social
ukmndri.org
Could sleep changes signal the early stages of MND or FTD?
Research has found that disrupted sleep may offer some clues to possible early warning signs of the ALS or FTD.
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UK MND Research Institute @ukmndri.bsky.social · 21/06/2025
Today is #MNDAwarenessDay, a moment to highlight the hidden realities of living with #MND. Our translational research projects aim to find treatments for MND through a national, coordinated approach. 👉 Discover more: ukmndri.org/2025/06/20/f...
ukmndri.org
How our translational research will find new treatments for MND
On MND Awareness Day, we’re spotlighting the projects accelerating real progress and explaining why translational research is key.
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UK MND Research Institute @ukmndri.bsky.social · 05/06/2025
Read about our latest findings from the @MNDRegister showcased at the @ENCALS Meeting 2025.🌍 Findings ranged from a new #MND/#ALS incidence and prevalence analysis to clinical characteristics and outcomes. Read more here⬇️ ukmndri.org/2025/06/04/m...
ukmndri.org
Our latest findings from the MND Register at ENCALS 2025 - UKMNDRI
Read about some of our latest findings from the MND Register that were showcased at the ENCALS Meeting 2025 in Turin, Italy.
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UK MND Research Institute @ukmndri.bsky.social · 29/05/2025
We are pleased to announce that the @ucl Queen Square Motor Neuron Disease Centre Sixth Hybrid #ALS/#MND International Symposium in Partnership will be held on Friday 5/9/25. The theme is Translating Targets to Therapies. To register, click below⬇️ www.eventbrite.co.uk/e/ucl-queen-...
eventbrite.co.uk
UCL Queen Square MND Centre Sixth ALS/MND International Symposium
International Conference, in partnership with the UK MND Research Institute, on ALS / MND - TRANSLATING TARGETS TO THERAPIES
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UK MND Research Institute @ukmndri.bsky.social · 28/05/2025
This week, we launched our brand new and redesigned website for the @MNDRegister.🗺️ But why is it so important? Find out how this vital resource is helping researchers understand who is affected by #MND/#ALS and why. 📖Read more below. ukmndri.org/2025/05/28/m...
ukmndri.org
Why our MND Register is a vital resource for MND research - UKMNDRI
The new MND Register website helps track MND across the UK and support research into who is affected, how, and why. Visit to learn more.
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UK MND Research Institute @ukmndri.bsky.social · 27/05/2025
🚨We’ve launched a new home for the @MNDRegister! The MND Register is the first comprehensive source of information about people with #MND/#ALS. We hope that by counting every person with MND, we can learn more about the disease. Learn more below🔗 mndregister.ac.uk
mndregister.ac.uk
MND Register for England, Wales and Northern Ireland
The primary objective of the MND Register is to build a centralised database of patients with MND across England, Wales and Northern Ireland.
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UK MND Research Institute @ukmndri.bsky.social · 20/05/2025
🔬RESEARCH SNAPSHOT📢 A recent study has uncovered that a breakdown in communication between structures in nerve cells can disrupt their ability to produce energy. This could potentially lead to new treatment targets for #MND/#ALS 🔎Read more👇 ukmndri.org/2025/05/20/r...
ukmndri.org
Research reveals how disrupted energy production in cells damages neurons
A new study highlights how disrupted energy production in nerve cells is caused by disrupted cell communication, offering a potential new treatment target.
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UK MND Research Institute @ukmndri.bsky.social · 15/05/2025
📄The UK MND Clinical Studies Group has released an official statement in response to the MIROCALS study results. Find out what it means for future research into #MND / #ALS 🔗 ukmndri.org/2025/05/15/uk-mnd-clinical-studies-group-issues-statement-on-mirocals-trial-findings/
ukmndri.org
UK MND Clinical Studies Group statement on MIROCALS trial
The UK MND Clinical Studies Group has released a statement regarding the MIROCALS clinical trial results, recently published in The Lancet.
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UK MND Research Institute @ukmndri.bsky.social · 17/04/2025
We’re working to shape the UK’s research environment for MND to accelerate the search for a cure.🔬 Our goals: ✅ Accelerate drug discovery ✅ Better understand MND ✅ Support research participation ✅ Coordinate a national strategy Learn more 👉 ukmndri.org/ourstory
ukmndri.org
About the UK Motor Neuron Disease Research Institute
Researchers across the country are carrying out world-leading MND research in a coordinated way to accelerate the search for a cure.
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UK MND Research Institute @ukmndri.bsky.social · 14/04/2025
Introducing our new Research snapshot series. Where we highlight the latest #MND studies reported by Readable Research @sheffielduni.bsky.social 🔬 First up: a look at toxic proteins in a mouse model of C9orf72-related MND and what it tells us about future treatments. ukmndri.org/2025/04/14/r...
ukmndri.org
Understanding the production of toxic proteins in MND
A new study has explored how toxic proteins build up in the nervous system and whether future treatments might help stop them.
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Reposted by UK MND Research Institute
My Name'5 Doddie Foundation @mndoddie5.bsky.social · 07/04/2025
📢 Calling all researchers! Thinking of applying for our Discovery Network or Advancing Treatments Award? Don’t miss our webinar on 15 April at 12pm. Hear more about the awards, ask questions & gain insights on how to sharpen your application Here’s the link to join 👇 us06web.zoom.us/webinar/regi...
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UK MND Research Institute @ukmndri.bsky.social · 08/04/2025
The international #LighthouseII trial testing HIV drug Triumeq for #MND has been halted early after an interim analysis showed no survival benefit. A full analysis will follow. Thank you to all who took part. Read more ⬇ ukmndri.org/2025/04/07/l...
ukmndri.org
Lighthouse II study of Triumeq for MND halted after interim analysis - UKMNDRI
The international Lighthouse II clinical trial investigating the HIV drug Triumeq as a potential treatment for MND has been halted early.
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UK MND Research Institute @ukmndri.bsky.social · 26/03/2025
Following a successful first year of their Research Strategy, @mndoddie5.bsky.social has launched the 2025 Advancing Treatments Award & Discovery Network Award. For details & to apply, visit their Funding Opportunities page! #MND www.myname5doddie.co.uk/research/fun...
myname5doddie.co.uk
Our Funded Research: Advancing Knowledge and Treatment for MND
Discover the cutting-edge research latest breakthroughs we fund to advance the knowledge and treatment of Motor Neurone Disease (MND)
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UK MND Research Institute @ukmndri.bsky.social · 25/03/2025
A huge thank you to everyone who took part in and supported the Darby Rimmer Foundation’s #MarchOfTheDayII🙌 Your incredible efforts help fund vital #MND research and support those affected by the disease. Thank you to all who sponsored us.
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UK MND Research Institute @ukmndri.bsky.social · 27/02/2025
🎥Watch this short film highlighting the important progress in #MND research from @uclbrainscience.bsky.social and @crick.ac.uk With a $100m investment and patient safety trials expected for 2026, it offers real hope for new future treatments. Watch below👇 vimeo.com/1055246074?r...
vimeo.com
TURNING THE TIDE PART 2
This is "TURNING THE TIDE PART 2" by Quickfire on Vimeo, the home for high quality videos and the people who love them.
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UK MND Research Institute @ukmndri.bsky.social · 18/02/2025
Last week, MPs from the APPG on #MND visited our labs at @kingscollegelondon.bsky.social to explore groundbreaking research and discuss the future of MND research. Political support is vital to driving progress towards new and effective treatments. ukmndri.org/2025/02/18/m...
ukmndri.org
MPs visit UK MND RI labs to explore groundbreaking research
Showcasing our pioneering research Last week, MP members of the All-Party Parliamentary Group (APPG) on Motor Neuron Disease (MND) visited King’s College London to witness firsthand the pioneering res...
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UK MND Research Institute @ukmndri.bsky.social · 07/02/2025
Many people with #MND are asking about ellorarxine. How are new drugs approved, and what does the evidence say about this research and drug? 🔬 We break down the drug development process and how we’re working to speed it up. ukmndri.org/2025/02/07/a...
ukmndri.org
An update on Ellorarxine - UKMNDRI
As neurologists specialising in the care of people living with motor neuron disease, we are receiving increasing enquiries about a drug called ellorarxine. Many of our patients are asking for access, ...
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UK MND Research Institute @ukmndri.bsky.social · 30/01/2025
🚨 Exciting news! We've just launched the first Supporter Edition of our newsletter!🚀 If you want to stay up to date with the latest #MND research and breakthroughs from the us, make sure to sign up now and never miss an update. ukmndri.org/sign-up-for-...
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UK MND Research Institute @ukmndri.bsky.social · 29/01/2025
🚨We're working to accelerate the development of new treatments for #ALS. Read more about how our pioneering study, EXPERTS-ALS, aims to rapidly screen potential drugs for evidence that they can slow progression in people with ALS. 🔗 Find out more 👇 ukmndri.org/2025/01/29/s...
ukmndri.org
Showcasing our groundbreaking EXPERTS-ALS study for MND treatments - UKMNDRI
EXPERTS-ALS is a ground-breaking initiative to accelerate the development of new treatments for amyotrophic lateral sclerosis (ALS). We’re excited to showcase one of our flagship projects, the EXPErim...
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